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Relapsed and Refractory Multiple Myeloma: What’s the Difference?

Relapsed and Refractory Multiple Myeloma: What’s the Difference? from Patient Empowerment Network on Vimeo.

Dr. Peter Forsberg defines relapsed and refractory myeloma, terms often used when discussing myeloma, but not always explained.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take

Discussing Treatment with Your Doctor: Key Questions to Ask

Find Your Voice Myeloma Resource Guide

Transcript:

So, I think that in differentiating relapsed and refractory multiple myeloma, they sometimes get lumped together and you might say relapsed and refractory myeloma. And that’s partly because that’s groups of patients who are included in the same clinical trials or different things like that.  But they are different things. A patient who is relapsed may have been off treatment for a substantial amount of time before they relapsed. A patient with refractory multiple myeloma, they may be refractory to just one type of medicine.

You may be refractory just to lenalidomide if you’re myeloma progressed or relapsed while you were taking it, or it may mean that you have not responded very substantially to any of the medicines you have received so far. So, there are different categories even within refractory myeloma. Whether it’s just to one or multiple different medicines, or if it’s more broad where we’re having a hard time getting a response with even different combinations.

ASH 2018 – Latest News and Research in Multiple Myeloma

ASH 2018 – Latest News and Research in Multiple Myeloma from Patient Empowerment Network on Vimeo.

Dr. Amrita Krishnan, Director of the Judy and Bernard Briskin Center for Multiple Myeloma Research, City of Hope, shares the latest news and research that was shared at the ASH 2018 conference in the field of Multiple Myeloma.


Transcript:

Esther Schorr:

Hello to everybody.  This is Esther Schorr with Patient Power, and I’m here today at the 2018 ASH conference, the American Society of Hematology.  And I’m surrounded by, oh, 20-, 25,000 amazing researchers and clinicians who are studying hematological malignancies.  And I have about me today Dr. Amrita Krishnan.  Is that correct?

Dr. Krishnan:
That’s correct.

Esther Schorr:
And she is the Director of the Multiple Myeloma Program at the City of Hope in Los Angeles.  Thank you for being here.  So what I wanted to talk to you about today is what’s going on for myeloma patients.  What are the headlines from ASH this year?

Dr. Krishnan:
Good morning, Esther.  Thank you for the opportunity to talk.  I don’t even know where to begin.  There’s—every myeloma session has been packed, standing room only, which tells you obviously, number one, the advances we’re making and the enthusiasm regarding them.

I’d say the three biggest news really is obviously CAR-T cells in relapsed disease, and we started out just hearing about one CAR-T construct, the BB121.  Now we obviously are hearing many other companies presenting their results and other CAR-T constructs, which I think is very good for us because we can understand better both the technology as well as side effects and efficacy and understanding among different T-cell constructs.

The other big thing, I would say, antibody drug conjugates by specific antibodies.  And then the last but not least let’s not forget in terms of stem cell transplantation there was a big session this morning looking at new drugs in the maintenance setting, so specifically oral proteasome inhibitors.

Esther Schorr:
Oh, boy.  Okay.  So now I’m going to drill down a little bit from a lay person’s standpoint about what you just said.

Dr. Krishnan:
Okay.

Esther Schorr:
It’s a lot of alphabet soup.  So I know that you’ve been doing some work with the drug daratumumab (Darzalex).  It’s a mouthful, and I know that that’s a monoclonal antibody.  And can you talk a little bit about what the relevance is about that?  Because I think our audience has probably heard of it but doesn’t know what’s happening in that area.

Dr. Krishnan:
Sure, happy to.  So daratumumab targets CD38, which is a protein on the myeloma cell.  So it’s very specific in terms of attacking the myeloma cell.  Now, that protein is expressed in other things like red blood cells, but really it’s very highly expressed on plasma cells, sort of the myeloma cell per se.  So daratumumab was already approved for relapsed myeloma, both multiply relapsed as well as patients who have a first relapse in myeloma in combination with some of the other drugs we think about such as bortezomib (Velcade) or lenalidomide (Revlimid).

This meeting this year, though, the big excitement is in regards to using daratumumab in newly diagnosed myeloma.  So we already know it’s a very effective drug in the relapsed setting.  We’re familiar with the toxicity profile, and overall it’s quite well tolerated, and so now the question becomes if it’s such a good drug should we move it earlier in the course of therapy to get the maximum benefit.

Esther Schorr:
So it could be a first-line therapy.

Dr. Krishnan:
Exactly.  So it’s already approved in the first-line setting in combination with Velcade, melphalan (Alkeran) and prednisone (Deltasone), so VMP, but that’s not a regimen we use in the United States.  So there’s going to be an abstract presented Tuesday, so I can’t even tell you yet because it’s a late breaker, but we only know a little hint of it which is using daratumumab plus lenalidomide and dexamethasone (Decadron) in newly diagnosed patients.  It’s called the MAIA study, and that’s the one that we’re all waiting to hear to see is that going to establish a new standard of care in the newly diagnosed front-line setting.

Esther Schorr:
So that helps me to understand that, thank you.  So then are there other studies that you’re involved in that would be interesting for patients to know about?

Dr. Krishnan:
So there’s another study that actually was presented yesterday.  It’s called the GRIFFIN study.  That uses daratumumab in combination with sort of I would say a quote/unquote standard regimen in the United States, RVD or lenalidomide, Velcade and dexamethasone.  And what it asks again the same question.  If you add to our standard backbone another potent agent, does it even further improve the responses?  So what they presented on Saturday was very early data on 16 patients, so we need to wait more, but it just shows you the excitement around that.  And that data they presented really was around the safety and suggesting that it’s a well-tolerated combination with a very high response rate, 100 percent response rate.

Esther Schorr:
Well, that would be my question then just as a care partner myself is when you’re talking about doing those kinds of combinations of two, three, four drugs are you all looking at the combined toxicity of those things and the side effects?

Dr. Krishnan:
Oh, yes, absolutely.  So the MAIA study, for example, very specifically looked at the three drugs of daratumumab plus len-dex comparing it to the two drugs, lenalidomide and dexamethasone, so–and the same thing with the GRIFFIN study.  That also was randomized so half the people got daratumumab in combination, the other half just got the standard RVD.

And there was, to be fair, a lightly higher increase in side effects when you added the daratumumab, a bit more infections and a bit more blood toxicity, so lower white counts.  So it is something to sort of, you know, take as a note of caution too, when you add more drugs that you do certainly expect that you are going to get more toxicity.  And obviously it becomes does the benefit outweigh the potential risk.

Esther Schorr:
As usual.  So I guess the other question I have is where does stem cell transplantation fit in all of this, or does it?

Dr. Krishnan:
So obviously I have a somewhat biased opinion.  I come from City of Hope, which is the largest transplant center in California, and two things I could say in terms of myeloma.  So we do over 8,000 transplants a year in the United States for myeloma, so it suggests that it’s a standards of care backbone of therapy.

As a transplanter I would say transplant still has the longest track record in terms of remission length and even if you compare it to standard RVD chemotherapy you get a longer remission when you throw transplant into that mix.  And I think what will be of interest to us is further improving upon that by either different maintenance strategies or induction strategies, so new treatment before the transplant as well to further improve the outcomes of the transplant.

And then the other thing I should mention, this is not a study that is open yet but it’s a study that we actually had some meetings about through the BMTCTCN, so a cooperative group of transplant networks, trying to ask the question.  So this is a group—you know, I used to chair the myeloma committee, and I’m still on the committee—we try and look ahead.  Right?  So we say, what can we do as a strength of network of transplant centers that patients really need?  What is the question they want to ask?  And one of the unmet needs is high risk-myeloma.  So whatever we do right now, and there’s been data presented at this meeting too, we need to do better.

For those patients who have advanced stage of myeloma, high-risk cytogenetic abnormalities, the therapy we have right now is still not optimal.  And one of the things that we’re going to do that we’re very excited about is we’re going to open a study that we’re literally going to go home and start writing in January, using CAR-T cells after an autologous transplant for patients with high-risk myeloma.

Esther Schorr:
So that gives—that’s hope for patients that have not had any real viable treatments till now or durable ones.

Dr. Krishnan:
I think that durable is what we would say.  So we’re all very excited about that.  It’s going to harness our strengths as transplanters, our strengths in cellular therapy and CAR-T and moving it up front.

Esther Schorr:
Good.  Well, thank you, Dr. Krishnan for all the work that you and your associates are doing.  I know that it’s, especially for myeloma patients and their families, it’s so important.  So thank you.

This is Esther Schorr from San Diego at the ASH conference.  Remember, knowledge can be the best medicine of all.

Notable News February

At this point in the year many of us have already given up on our New Year’s resolutions, but if your resolution was to lose weight this year, it might be time to revisit it, especially if you are a young adult. A study reported by cnn.com reveals that obesity-related cancers are increasing among the 24 to 49 year old age group, and the risk is increasing at progressively younger ages. There are six cancers that showed increases in younger adults — colorectal, endometrial, gallbladder, kidney, pancreatic, and multiple myeloma. These cancers are traditionally found in people in their 60s and 70s, but now the risk of these cancers in millennials is almost double what it was for baby boomers when they were the same age. More information about the study and the connection between obesity and cancer can be found here.

The increase in cancer rates in younger adults is alarming, but being able to detect the disease at an earlier stage increases the chance for survival. Pancreatic cancer is a cancer that is difficult to diagnose early. It is almost always diagnosed at an advanced stage and about 95 percent of people diagnosed with it will die of it. Now, Norwegian researchers may have a clue into better understanding pancreatic cancer which could eventually lead to earlier diagnosis, reports sciencenordic.com. The researchers learned that there may be a connection between blood type and pancreatic cancer. People with blood type A have a slightly increased pancreatic cancer risk and people with blood type O seem to have a slight protection from the disease. The differences in risk are small, but the data is consistent to studies in other countries and may provide insight into better understanding the disease. Researchers hypothesize that intestinal flora, the immune system, and digestive enzymes may play a role in the contraction of the disease and give researchers a direction for further study. Learn more here.

While not on the list of cancers being found more often in younger adults, prostate cancer remains the most common cancer among men. Typically, it can be successfully treated, but the cancer often spreads making more aggressive treatment necessary. Unfortunately, there’s been no way of knowing when or if the cancer will spread — until now. There’s a specific gene responsible for the spread of prostate cancer, reports medicalxpress.com, and a study at Rutgers University has found it. The NSD2 gene, which indicates when patients are at high-risk for the cancer to spread, was found through a computer algorithm. Researchers were able to turn off the gene in mice and prevent the cancer from spreading. Being able to identify when the cancer may spread will allow for more targeted treatment and prevention. Also, it might be possible to use the algorithm for other cancers as well, which is good news for everyone. More information about the NSD2 gene and the computer algorithm can be found here.

No matter what age someone gets cancer, pain can often be a side-effect of the cancer itself or of the treatment. Pain occurs in up to 50 percent of people with cancer. Cancer-related pain is real, and it can last long after treatment, but cancer.gov says that there is renewed interest in seeking new, non-addictive pain medications, as well as other pain management solutions, for cancer patients and survivors. Medications are being developed, and options such as cannabinoids (chemicals found in marijuana), are being explored to treat bone pain and pain in the head and neck from oral cancers. Pain is also a side-effect of treatments such as chemotherapy, and prevention is being sought for that type of pain as well. Non-drug treatments that are being considered are yoga, Tai Chi, and mindfulness meditation. There is much, much more to be explored about the potential for pain management, but more about what is already being done can be found here.

Alleviating the pain of cancer whether through pain management, early diagnosis, or preventing the disease from spreading is definitely a step in the right direction for ensuring that all patients are empowered patients.

On the Horizon for Multiple Myeloma

ASH 2018 Conference Coverage

Dr. Elisabet Manasanch, Assistant Professor Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center, shares what’s the latest and on the horizon for Multiple Myeloma.

ASH 2018 – Multiple Myeloma Highlights

A Multitude of Options in Myeloma

Dr. Robert Orlowski, Director of Myeloma and Professor in the Departments of Lymphoma/Myeloma and Experimental Therapeutics at The University of Texas MD Anderson discusses the multiple myeloma highlights and what patients can be excited about from the ASH 2018 meeting.


Transcript:

Esther Schorr: Hi there. This is Esther Schorr from Patient Power coming to you from ASH 2018 in San Diego, and I have with me today Dr. Bob Orlowski who has joined us at Patient Power before. He’s the Director of Myeloma and Professor in the Departments of Lymphoma and Myeloma and Experimental Therapeutics—that’s a very long title—at the University of MD Anderson—University of Texas MD Anderson. Sorry.

Dr. Orlowski: Thanks very much for having me.

Esther Schorr: I’m glad you’re here again.

Dr. Orlowski: It’s a pleasure to be back on Patient Power.

Esther Schorr: Thank you, sir. So what’s going on in myeloma now at ASH? What are the highlights? What are patients going to be excited about, and what are you excited about?

Dr. Orlowski: One of the exciting areas is definitely talking about the different therapies that are targeting what’s called BCMA or B-cell maturation antigen. This is a protein on the surface of myeloma cells, and the excitement about it is it’s a target which is almost only on myeloma or normal plasma cells, not on other kinds of tissues. And that’s important because if you want to target for immunotherapy, you don’t want that target to be on too many normal cells, or the immune therapy will kill those cells and cause side effects.

So there are really three categories of drugs now that are looking very attractive. One is what’s called an antibody-drug conjugate. So this is a plain old antibody that has another chemical attached to it, and it’s given usually IV right now, attaches to the myeloma cell. It then gets inside the cell and the drug is released. So the antibody is essentially like a carrier molecule.

Esther Schorr: Kind of like a cruise missile?

Dr. Orlowski: Sort of like that. I like that analogy, yes. And then it blows up, using that analogy, the cancer cell once it’s inside.

So one of the first of these drugs that already is in the clinic is showing a 60 percent response rate in very heavily pretreated patients. The registration study, meaning the trial that hopefully will get it approved by the FDA, has already finished enrolling, so we’re hopeful that maybe by the end of 2019 this drug as a single agent will be available. And it’s really easy to give. It’s IV once every three weeks, which is pretty darn good.

Esther Schorr: And what’s the drug called? I’m sorry I missed that.

Dr. Orlowski: Well, it’s a good question. Actually, it doesn’t have a name yet, which is why I didn’t tell you what it’s called, but the abbreviation for it is GSK 916.

Esther Schorr: Okay.

Dr. Orlowski: And the reason for that is it’s actually quite expensive to come up with a name, because they have to find a name that, first of all, is not confused with other drugs so that it minimizing errors and also one that us poor feeble-minded doctors will remember so that we prescribe it often.

Esther Schorr: We’re not sure how you can remember all the letters anyway. Okay. So that’s one. Is there something else going on that you got to share?

Dr. Orlowski: So a second category of drugs that target the same protein, BCMA, the first formal presentation of those data were shown here at ASH, and this is what’s called BiTE or Bi-specific T-cell engager. And it’s sort of is a molecule, if you want to use the cruise missile analogy, that has two war heads. One end binds to the cancer cell. The other end binds to the patient’s own T cell, brings them together and the T-cell attacks the cancer cell. So it’s a way to use immune therapy with the patient’s own immune cells, and there are reports here of the first one of these which is called AMG 420. Again, doesn’t have a name yet, but it’s showing in very heavily pretreated patients complete responses with MRD, or minimal residual disease, negativity, which is really exciting.

Esther Schorr: So and that’s different than—and we’ll probably talk about it in a minute—that’s different than CAR-T.

Dr. Orlowski: Exactly.

Esther Schorr: Okay. So we can talk about that in a minute.

Dr. Orlowski: Yeah, that would be great. So the next topic is the CAR-T, also against B-cell maturation antigen, or BCMA. It’s a little more complicated though because what you have to do is you take out the patient’s own T cells and then in a laboratory you infect them with a virus. The virus has a gene in it that expresses a receptor on the T cells so that they can better recognize the cancer cells.

Esther Schorr: An invitation.

Dr. Orlowski: Exactly. Kind of. I like that.

Esther Schorr: Okay.

Dr. Orlowski: And then you infuse the cells back into the patient. They find the cancer cell, they attack it, and they kill it. So it’s great, because it’s personalized. It uses the patient’s own T cells. The problem is that it takes two to four weeks to manufacture the cells after they’ve been taken out of the patients, and so in the meantime the myeloma can sometimes be creeping up. So that’s one problem.

And also there are activities with the disease or with the T cell against myeloma, but there are also some side effects like cytokine release syndrome. But the response rates with some of the more advanced molecules are in the 90 to 100 percent range, and the durability of that is at least a year to 18 months, depending on what patient population you look at. And those are the most mature data of the three categories of immune therapies that we’ve talked about.

Esther Schorr: So of those three are any of them being looked at for first-line therapy, or these are at the moment still for people who have relapsed or are more difficult cases?

Dr. Orlowski: Right now it’s more for very advanced disease, but there are already trials planned with all three of these technologists in earlier patients and some in newly diagnosed patients, especially those with high-risk disease, because they still don’t do as well with standard therapies that we have. So it’s really an exciting time because these are some of the best results we’ve had in very difficult to treat patients, which means they should work even better when we give them earlier.

Esther Schorr: So one other question then. What’s happened to stem cell transplants for multiple myeloma patients? With all of these new combinations of treatment s, where is that in the mix of consideration for treatment?

Dr. Orlowski: Stem cell transplant is still considered part of the standard of care for patients with newly diagnosed myeloma, and in some cases it can be used for relapsed disease, especially if the patient had a really good durable benefit with a first transplant. The advantage of the stem cell transplant right now is that it with works very well, the toxicity profile is very well defined, and compared to a CAR-T cell it’s actually relatively cheap. But as the technology hopefully becomes cheaper and more available there would be great interest in comparing outcomes of people getting chemo plus a transplant, for example, versus chemo plus a CAR-T cell.

Esther Schorr: So it sounds like there’s a lot more options that are coming up for multiple myeloma patients. Is there anything else that patients that are listening would want to know about, that they should feel good about?

Dr. Orlowski: Well, there’s a lot more data with other immune therapies including earlier use of daratumumab (Darzalex), which is an anti-CD38 antibody. One of the presentations, which is still to come on Tuesday, shows the data of that drug with lenalidomide and dexamethasone in previously untreated patients, and the results really look excellent. So that will probably be one of the new standards of care for transplant ineligible patients. And there are studies ongoing with daratumumab in transplant eligible patients as well.

Esther Schorr: That’s a lot.

Dr. Orlowski: And that’s not all of it, but I think that may be all we have time for.

Esther Schorr: Thank you so much, Dr. Orlowski, for being with us again and making this a little more comprehensible for us normal mortals.

Dr. Orlowski: Thank you very much.

Esther Schorr: This is Esther Schorr coming to you from ASH. And remember, knowledge can be the best medicine of all.


Please remember the opinions expressed on Patient Empowerment Network (PEN) are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Myeloma Patient Cafe® November 2018 – Advocacy Opportunities for Myeloma Patients

Patient Advocate, Cindy Chmielewski (@MyelomaTeacher), leads this Myeloma Patient Café on advocacy opportunities for myeloma patients and care partners and the benefits of them.

Measuring My Myeloma With MRD Testing: What Is My Disease State?

Minimal residual disease (MRD) testing is a big topic of interest for many myeloma patients and care partners. What exactly is the role of MRD testing in myeloma, and is it worthwhile?

Downloadable Guide

Watch as Cherie Rineker, a myeloma patient, Dr. Elisabet Manasanch, an oncologist at MD Anderson Cancer Center and Tiffany Richards, an advanced practice nurse, discuss how myeloma is being measured to accurately define myeloma disease states.


Transcript:

Andrew Schorr:
Hello, and greetings from Southern California. I’m Andrew Schorr with Patient Power. Welcome to this Patient Empowerment network program. This should be very helpful over the next 90 minutes for all of you living with multiple myeloma. And some people, thank God, now have been living a long time. And we’re going to be discussing measuring my myeloma with MRD testing, what is my disease state. So, testing has come a long way, and we’re going to hear the latest.

Okay. Are you ready to go? All right. Now, let’s go to Houston, Texas. We have a lot of people to meet. And one of them is a physician who is a specialist in multiple myeloma. She is at the MD Anderson Cancer Center in Houston. And that’s Dr. Elisabet Manasanch. So, Dr. Manasanch, thank you so much for being with us. She’s going to pop herself on there. And thank you so much for being with us. And we’re going to learn a lot more about myeloma testing, as we go. Also, I want to have someone else join us from MD Anderson. She’s been on our programs before. She’s a nurse practitioner specializing in multiple myeloma. And that is Tiffany Richards. Tiffany, welcome to our program. Hi, Tiffany.

Tiffany Richards:
Hi.

Andrew Schorr:
Okay. And then, of course, on every program, we always have a patient. And some of you in the myeloma community have been following Cherie Rineker from Houston, who has been living with myeloma since 2012. Not too long ago, nine months ago, had CAR T-cell therapy. But she’s been through so many treatments, and she’s in Houston as well. Cherie, welcome to our program. Cherie is going to pop herself—hi, Cherie, welcome back.

Cherie Rineker:
Hi, Andrew. It’s great being with you again.

Andrew Schorr:
Okay. So, let’s hear a little bit of Cherie’s story because, for any patient going through, you want to know how are you doing. And then, we’re going to learn from the doctor and from Tiffany more about MRD testing or testing in general. And then, we’ll take your questions, of course. So, first, Cherie, to start with, you were diagnosed back in 2012. And I think you were traveling at the time, is that right?

Cherie Rineker:
No. I was actually going to school to become a natural esthetician before getting very sick.

Andrew Schorr:
In your professional background, I know you’ve been a triathlete. You’ve been a very active woman.

Cherie Rineker:
Yes.

Andrew Schorr:
And you’ve done a lot of different things. You’ve been a massage therapist but particularly active. So, it started with pain in your arm and your side, right?

Cherie Rineker:
Pain in my side, pain in my ribs and my sternum, in my back. I was a massage therapist, so I kept self-massaging myself
with tennis balls that I would lay on trying to find the right spot. And it just would go to different places. It would never ease up. It was just slowly getting worse and worse.

Andrew Schorr:
And this went on for like six months, you were going through all sorts of problems and fatigue.

Cherie Rineker:
Right, right. Yeah. Slowly, the fatigue was getting worse and worse, to the point that my daughter was 6, at the time, and I would still pick her up, and I couldn’t do that anymore. And I had a hard time climbing up the stairs to my apartment. I ended up having low grade fevers and a lung infection that just didn’t want to go away. And I was being tested for all kinds of things. Everything came up negative. This little word, cancer, started creeping in my mind. And that’s what it ended up being.

Andrew Schorr:
And you have lesions on your bones, right?

Cherie Rineker:
They were all over my rib cage, all over my spine and my scalp, on my pelvis, yes.

Andrew Schorr:
How old were you, at the time of diagnosis, Cherie?

Cherie Rineker:
I was 44 years old. But I really believe that I had some form of myeloma for years, because I remember at 40 feeling very fragile, in my bones. And I asked my gynecologist, if I could get a bone density test. And he asked me if I was still having regular periods. I said yes, and he said you’re fine, don’t worry about it. And I think that maybe they could have found something, at that time, already.

Andrew Schorr:
I have a question for Tiffany just while we’re talking about diagnosis. So, Tiffany, she was a pretty young woman. Often, we think of people older with myeloma. But really, there is an age range, isn’t there?

Tiffany Richards:
There is. Certainly, the median age is about 69 years of age. But we do see patients who are younger being diagnosed with myeloma.

Andrew Schorr:
Okay. So, Cherie, you had your diagnosis. It’s a shocker. So, since 2012, you’ve been through a whole range of treatments.

Cherie Rineker:
Yeah. They started out they were going to do surgery on my spine. I had plasmacytomas on T3 and T4, one at one end to the spinal canal, so they were worried I was going to be paralyzed. The surgery was too tricky, so they chose for radiation. And after that, I moved from Tempe, Arizona to Houston, Texas to be closer to MD Anderson and went through nine months of induction chemo, which we changed up I think three or four times. And the side effects got worse and worse. So, we went ahead with bone marrow stem cell, my first one, in August 2013, even though I still had 80 percent of my lung and my bone marrow. And four months later, I chose for a second stem cell transplant, which only brought my numbers down to 20 percent. And then, I’ve been on continuous chemo through December of 2017, when I told Dr. Lasky I am done with chemo. It was destroying my immune system. And I was just very sick. And that’s when I started searching for a CAR-T trial.

Andrew Schorr:
Oh, man. So, you’ve been through it. There are some people who have done pretty well with transplant. Some people even have had oral therapies or infused therapies. But for you, you kept running through them.

Cherie Rineker:
Yes. And I found out later I had translocation (11;14), which is not supposed to be very aggressive myeloma. But Dr. Lasky said mine was just very stubborn. And it just didn’t do good with medicine. I would have short responses, and then, I would relapse again. And that’s how I went through the 13 different regimens.

Andrew Schorr:
And so, you had testing many different times. But the news often came back not so good.

Cherie Rineker:
Yeah. Some months, it would go better than others. And I would have a graph, in my bathroom sink, just for positive affirmation. And seeing that go down to zero, my first one, I think based on that analogy, I was supposed to be in complete remission August of 2013, which, obviously, didn’t happen. And it was just so devastating every time to see the numbers go down for a bit and then, creep back up again. And going up, Dr. Lasky often said that sometimes happens. But after so many relapses, I knew, as soon as those numbers went in the wrong direction that meant I had become refractory, and I had relapsed.

Andrew Schorr:
All right. So, just for our audience, CAR T-cell therapy that some people have heard about for this blood related cancer and for some others now, too, remains experimental, in some areas. And some lymphoma is approved, but not yet in myeloma. But you entered a trial. And, so far, over nine months now, it’s worked out, right?

Cherie Rineker:
Yes. I got my CAR T-cells back on March 12. It’s my fourth birthday now, after my birth and two stem cell transplants. And I went through a serious cytokine release storm for about a week and then, came out and started feeling better than I had in years real quick. And about three weeks later, I had my first complete remission, negative, no Bence Jones in my urine, no kappa light chains, ratio good. And then, the first bone marrow biopsy showed complete negative. They couldn’t find any myeloma.

Andrew Schorr:
And you’re going to go back for another check up soon where we hope that that still goes that way. And I should just mention, some people have seen some things we’ve posted along the way, and Cherie has, too, where I was thrilled when Cherie sent me a picture. And having been really almost at death’s door, she was out gardening, right, Cherie?

Cherie Rineker:
Yes. I do everything now. I’m back to teaching yoga and meditation. I’m doing reflexology again. I’m going to the gym, for the last month, trying to get strength in my body and my bones and my muscles. I have weened myself off all opioids. So, my medicine cabinet that was just bursting at the seams before, now, just has three little things that Valtrex, we, I guess, have to be on indefinitely and a couple of other little things. But, yeah, I feel healthier than I did probably one or two years prior to my diagnosis. So, it’s really incredible.

Andrew Schorr:
This is maybe the new age of myeloma care, with a much broader range of treatments than we’ve ever had before. And for someone like Cherie where so many other treatments that have worked for some of you who are watching were not working for her. And Doctor, I’m sure, when you hear this story, that makes you feel great that medical science has advanced, in this way.

Dr. Manasanch:
Yes. It’s great that we can use our own cells to treat diseases, including cancer. I do think that, of course, these therapies are some of the major advances that we’ve had over the last five years. In fact, when the CAR-T cells were starting, I was a fellow at the National Institutes of Health. And the first patient that got one of those infusions was a patient with, actually, leukemia. And I was on-call that night, and I was called because the patient was getting a cytogram release, so I had to send this patient to the ICU. And the patient, subsequently, did all right, but this was many years before this was going to be done in myeloma.

And then, I remember very well, when I left NIH to come here, that was in 2014, one of the days I was leaving, I kind of ran into Dr. Korkendorfer who is really the person, the scientist, that has developed this in myeloma with targeting the BCMA antigen. So, he really should have a lot of credit for this. He’s the one that really started the identification of this target that now is used in many other therapies, as well in clinical trials, not just for CAR T-cells. And he kind of was waving to me and saying, “You know, I’m going to be starting this BCMA CAR T-cell study here. So, send me some patients.” So, this was back in 2014, of course. This therapy seemed to work very well. Unfortunately, most patients still do relapse from these therapies.

And so, this just means to us that we have to keep fighting to improve these therapies. So, these are still first generation of these therapies. I think that we can improve on them. And I think there’s a lot of research going on on that. Still there are some patients, like Cherie was saying, that are years out and doing well. So, I know that is not like this or everybody. But the hope is still there that we can improve on these therapies.

Andrew Schorr:
Okay. So, that brings us to testing. So, Tiffany, you’ve been working in myeloma for a number of years. You’ve done a lot of programs. The testing keeps getting better, right? But patients are saying to you, “How am I doing, how am I doing?” Like Cherie had the picture on the wall of the bathroom charting herself. Tell us about how testing is changing and this whole term of minimal residual disease. What does that mean?

Tiffany Richards:
Yeah, it’s a good question. So, when I started working here at Anderson 14 years ago, the light chains had recently been introduced. And we were starting to incorporate them into our response assessments. But, predominantly, we were looking at SPEPs and UPEPs. But, certainly, the light chains would give us an early indicator, if a patient was starting to relapse.

And then, over time, the response criteria have improved to now that we have minimal residual disease. And how I explain it to patients, I’m sure you’ve seen the slide with the iceberg. And patients, I think, relate to that. And I explained it to them that we pushed the iceberg far down below the level of detection that, with the most testing that we have, we can’t detect the iceberg anymore.

Andrew Schorr:
Okay. But that detection of cancer cells has become super sensitive now, right?

Tiffany Richards:
Yes.

Andrew Schorr:
So, okay, Dr. Manasanch, help us understand how are we assessing MRD? So, if you are working with a Pathology Department or whoever, what tests are they doing to determine whether a patient has been treated successfully, basically?

Dr. Manasanch:
So, we’re very fortunate here at MD Anderson because we have a fantastic flow cytometry lab. And so, we have minimal residual disease testing by flow cytometry. And that’s just sending aspirate of bone marrow, so just the blood and the aspirate, when you get a bone marrow biopsy done, and sending it for analysis through a special machine that really can look very carefully at the markers around the surface of the myeloma cells. And by looking at these markers, we can determine whether the plasma cells are normal or abnormal. And we can determine how many, in that specimen, are plasma cells and then, how many are normal and how many are not normal.

And so, if we do find any that are not normal, then, that’s what we call minimal residual disease in a patient that has been treated. So, if you have multiple myeloma, and you have been treated for multiple myeloma, it is very common to do not just the blood studies and the 24 hour urine but also to do a bone marrow biopsy. And when you do the bone marrow biopsy, usually, that’s when you take a sample for analysis. Now, that’s what we do here at MD Anderson. Basically, we can detect one cell in hundred thousand, which is the sensitivity people are always talking about 10 to minus 4, 10 to minus 5, 10 to minus 6. So, ours here, with our flow cytometry testing, is 10 to minus 5, which is quite good. And it’s probably almost the best that you can get with flow cytometry, in the bone marrow. And so, we get the result within a few days. And so, we’re very lucky with that.

Now, there is also another technique. There’s a company called Adaptive Biotechnologies. And they have a test that is FDA approved. It’s called clonoSEQ. And they have different versions. And the most recent one, actually, is quite potent. And they can detect cells one in a million. So, I’m not sure, Cherie, if I may ask you, in the test that you had done, did you have the clonoSEQ test done, with flow cytometry?

Cherie Rineker:
I just emailed my oncologist, the trial oncologist, about that. And he said that I was MRD negative, with the clonoSEQ
was 10 to the negative 6.

Andrew Schorr:
Yeah. Because it’s very difficult to get the 10 to minus 6. So, the level of sensitivity is, basically, how many cells can you detect, in a sample of millions of cells, how many can you detect that are abnormal with myeloma. And so, with flow cytometry, it’s very difficult to get to one in a million. So, that’s why I suspected that’s probably done with the clonoSEQ assay. So, that test, basically, is available. The doctor has to send a sample to that company, Adaptive. And then, what I’m not very clear on is how the billing is done. Now, for here at MD Anderson because we already have an assay that is set up, it really doesn’t cost extra to patients to do. We really do it through flow cytometry. And so, that’s really what we’re doing at MD Anderson right now is flow cytometry minimal residual disease. It works pretty well. We know, from many studies, that it is predictive of how long a remission will last, in most patients.

However, each patient is so different that this is something that, whether, in your particular case, you need minimal residual disease or not is something that really has to be addressed with every patient because every patient is a little bit different. And one of major limitations of minimal residual disease is that it comes from the bone marrow. And the bone marrow is a blind biopsy, right. And so, people can have other things in other places, and we don’t see them. Now, it seems that, for most patients, it still works pretty well. But if you have a collection of plasma cells somewhere else that is not in that specific location where we do the bone marrow, that’s not going to show up. And so, that’s one of the limitations of this. And what we try to do with that is you can combine some imaging with the bone marrow test. And that even has a better prediction probably. So, you can do like a whole body MRI or a whole body PET CT. And then, you can look to see are there any lesions, anything that we’re not looking at the bone marrow. But I’m definitely having minimal residual disease negative but one to one million, which is a very good sensitivity,
after CAR T-cell therapy is excellent. It’s fantastic.

Andrew Schorr:
Oh, good. So, you got a second opinion here, Cherie.

Cherie Rineker:
And I will say I had the PET scan done as well. So, my only concern is because I relapsed so many times and so fast, how durable is this one? Will this one pop back, too? So, there’s some fear attached still.

Dr. Manasanch:
But that’s so difficult to tell because every patient is so different. Every patient is so different. And this is where it’s very easy to take a study and say 50% of these patients did this, 50% did this. But when you have that patient in front of you, it’s so hard to predict the individual rates because you mentioned, for example, I your case, all you had was this translocation (11;14), which really doesn’t signal this that this is going to happen. But it happened. And so, it’s so hard, when patients say how long am I going to live. I don’t think that we can tell. We can say, based on average, for your case, maybe this is what could happen. But really, no one knows.

So, each case is very, very individual. It’s very different. You really have to look at all of the things carefully. So, it has to be very careful analysis of each case. And so, this is why we run into surprises. But, overall, it is true that, if you have—no matter what type of myeloma you have, if you have a complete remission with minimal residual disease negativity that seems to pretend a good prognosis, in terms of the time that you stay in remission. And so, that’s important. And that usually translates into people living longer, the more you stay in remission. That’s usually how it goes. But, again, that’s a generalization. And every patient is very different. So, it’s just hard to do case by case.

Andrew Schorr:
And I want to ask Tiffany, so, Tiffany, you have patients come to you for follow-up care. And tests have been ordered along the way. And you’re going over the results with them. So, if it were me, and I had this, in my condition, chronic lymphocytic leukemia, where Dr. Wierda was also there at MD Anderson said, “You know, you’re not MRD negative.” And I was kind of crestfallen. And I said, “What does that mean?” He said, “You’re going to need treatment again sometime,” kind of like what the doctor was just saying, “but we don’t know when.” And for me, it was many years, actually, for that particular condition. But tell us how you described that because I’m sure you’ve seen people disappointed or feeling pretty good. So, how do you manage that, with your patients, Tiffany?

Tiffany Richards:
Yeah. I usually try to set expectations, right from the beginning, when a patient first comes in because all patients want to have a CR. And they all want to have the deepest remission possible. That being said, I tell them upfront that the majority of patients may not get there. But that I have patients who have never achieved a complete remission. And they’re living 20 years later. So, I always tell patients that, at the end of the day, we have statistics. And we use those to formulate our treatment plans. But they’re their own unique case. And, if you don’t get to that MRDnegative status that it’s not the end of the world, that it doesn’t mean that all hope is lost and that this is the worst thing on earth. So, I try to set that expectation right from the beginning, so that, if they don’t get it, they’re somewhat prepared for that, and that they don’t leave feeling super, super disappointed.

Andrew Schorr:
I want to remind our audience, if you have a question, and some people, certainly, have sent them in, just send it in to
myeloma@patientpower.info. Now, Doctor, let me ask you this. So, here’s the thing. You’ve got all of these variables. So, it sounds like the testing is one indication. But what are the other things you’re looking at? It seems almost like a constellation for you, as a practitioner, to know how is somebody doing. Or even, if you’ve had a certain treatment, how is that treatment going. So, tell us what else you look at. So, the MRD testing to the 10 to the whatever, 5 or 6, as you can, what else? How do you assess how somebody is doing?

Dr. Manasanch:
Well, so, the first things that we do is we have what we call our myeloma labs. And the myeloma labs include something called electrophoresis. That’s a test that looks at each patient’s individual paraproteins. Those are the proteins that the myeloma makes. So, most myelomas, about 80 percent to 85 percent make what we call—they make an immunoglobulin. And those immunoglobulins, they actually have two parts. They have a heavy chain and a light chain.

That’s how immunoglobulins are structured. And those immunoglobulins usually fight infections. But the immunoglobulin that the myeloma cells make does not fight any infection. In fact, I’m just going to go in there and say that we have some exciting research here where we’re going to be looking at whether these paraproteins target in myeloma. So, we don’t know what they target. In a healthy patient, an immunoglobulin is supposed to target an infection or something that is foreign to us. And, usually, it’s viruses, bacteria, and so on.

But in myeloma patients, we don’t know. And we’re trying to look into that to see what is going to happen with the etiology of myeloma. Now, that’s what we look at in the blood, so those immunoglobins, those paraproteins. About 10% or 15 percent of patients, they don’t have the heavy chain. So, they have only one part or two parts of the structure of immunoglobulin. Instead of having the heavy chain and the light chain, in the immunoglobulin, they just have the light chain.

So, when I say this, it may sound a little complicated, but it’s really very easy. Most myeloma patients, they have an immunoglobulin G. So, we look to see how much of the immunoglobulin G is in the blood. Some patients will have immunoglobulin A, some will have immunoglobulin M. Maybe one percent of patients will have immunoglobulin E or an immunoglobulin D as in David. Those are very rare, but we see them. So, that’s usually most patients, myeloma express some of those. So, that’s a nice way you can correlate how much tumor you have, how much myeloma you have, by how much of this protein is in the blood.

Usually, most of the time, you can correlate that pretty well. So, the higher the level is in the bone marrow, the higher it is also in the blood. And so, usually, with a simple blood test, you can already know a lot about the patient’s myeloma, if the levels are very high or not. So, the first thing we look at, again, is this electrophoresis.

And that tells us how much of those immunoglobulin are in the blood. And then, we have, also, the light chains, which are kappa and lambda. So, we look at those. Those are the second part of the immunoglobulin. And, again, about 15 percent of the patients, they don’t have the heavy chain. They don’t have the immunoglobulin G or D or M. They just have the light chain, kappa or lambda. So, patients that have the whole protein, the whole paraprotein, the whole immunoglobulin, both the heavy part and the light chain part, we look at that through electrophoresis. And that’s very useful. And that’s how we determine the response.

So, you have the patient that has an immunoglobulin G kappa myeloma, that’s what the myeloma is making. And they start with a number of four. So, even if that number goes from 4 to 2, that’s a partial response. If it goes from 2 to 0.4, that’s a very good partial response.

And if it goes to 0 that could be a complete remission. So, really, most of what you need to measure like partial response, very good partial response, is really just the paraprotein. If you have a light chain myeloma, then, you have to look at the light chains in the blood. So, you don’t look so much at this paraprotein and the electrophoresis, but you look at the light chains. So, basically, you need, for someone who has the regular myeloma like most people have that has both heavy and light chain, you just look at the electrophoresis. And that can tell you a lot already. And that’s just one test.

Then, if you want to know about complete remission, once you reach that zero, then, you have to look at something called immunofixation that tells you the type of paraprotein. You have to look at the light chains. Also, you have to look at the variations in the light chains in the blood. And you have to look also at the urine. So, usually, that’s what we do with each patient.

So, there’s a lot of tests involved in this. So, the urine, the best test to measure the urine, in myeloma, is still a 24-hour urine that measures how much of the Bence Jones protein, which is the myeloma protein in the urine, varies. And that can be done quite easily, although it’s a little bit cumbersome for patients. And you look at that. So, only once you reach your complete remission, once the numbers in the blood are negative, the numbers in the urine are negative, then, usually, that’s when we say, okay, we’re going to do a bone marrow biopsy.

And then, if the bone marrow biopsy is negative, the bone marrow is normal, then you can do your MRD testing, your minimal residual disease testing. And that’s how the levels of remission. However, it gets a little bit tricky because you can have a patient that has still some paraprotein in the blood. So, the blood markers are positive. The urine markers are positive. And then, you do your bone marrow, and you do your minimal residual disease testing, and that is still showing a little bit of the—sorry, that is, basically, negative.

So, you can have an MRD-negative test. And you can have patients having some paraprotein in their blood. Okay. The main explanation for this is because the paraproteins, the IgG kappa mainly, takes a very long time to disappear from the blood. So, you may actually be looking at the bone marrow, and you don’t see any myeloma in the bone marrow, and that’s actually a good thing. What it likely means, for most patients, is that, with time, what they’re seeing in the blood will go away. So, it does seem that the IgG kappa tends to linger in the blood.

So, if you have patients here that have IgG kappa, and they have a minimal residual disease testing in the bone marrow, and that is not normal, and they still have a little bit of their IgG kappa in the blood, then, it is likely that this will actually go away with time.

Whereas, if the MRD testing is positive, it is a little bit more difficult. So, it can give you chances. But, basically, there are a lot of tests that we use.

Andrew Schorr:
Wow. So, I want to say, first of all, thank you for that because ladies and gentlemen watching are living with myeloma. Now, you hear how complicated this is to really understand, maybe not for Dr. Manasanch, but for some, particularly community oncologists around the country, around the world, to really help you get a clear picture of what’s going on with you. And this whole thing about lingering of some of these paraproteins where you’ve had an MRD negative test, I’d say, oh, I have an MRD-negative test. And then, if this other one came up, I’d say, oh, my God, could you explain the linger. And it’s maybe not such a big deal, right?

Dr. Manasanch:
It doesn’t have to be a big deal. And, usually, it still is a good thing, if you have still a little bit of protein in the blood and they myeloma.

And then, the bone marrow is normal, and the flow MRD or the clonoSEQ is negative that usually, probably, means that it’s just taking you a little bit longer to clear that protein from the blood.

Andrew Schorr:
Wow. So, Tiffany, the doctor rattled off a whole bunch of testing and light chain, heavy, light. If somebody is diagnosed with myeloma, and I’m sure this—Cherie, you’ve sort of gone to school learning this, over the years, but it is overwhelming to try to understand this. Obviously, you have to have a healthcare team you trust. How do you help people through this? Because they want to know how am I doing.

Tiffany Richards:
Right. That’s a good question. I think you’re looking at your patient in front of you. So, you’re going to tell them what they need to know, what our goal for them is. So, if they don’t have light chain—if they have a regular myeloma, you’re going to talk about their M protein and what we want to see their M protein go to.

And so, you’re not having to like go through everything all at the same time. Usually, the physician I work with will explain the iceberg discussion to the patient, at their initial visit. But, obviously, there’s a lot of information that’s given to patients, at that point in time. And so, you’re really just trying to take it—I try and take one step at a time, with patients because I find that they get very overwhelmed with information overload. And so, trying to break down that information, I think, is useful for patients, rather than giving it to them all at one time and just reiterating to them, at each visit.

Andrew Schorr:
Good, thanks. So, Dr. Manasanch, what do you tell patients? So, again, you’ve said, well, we’re going to do this test, or we’re looking at these proteins or light chains. How do you help people work with you to have confidence that maybe things are working?

Dr. Manasanch:
Well, I know it seems complicated, but it’s really very easy. The way we have our results, at MD Anderson, is it comes through the paper sheet that has all of the results there very clearly. And you can really point out, okay, this is your result. This is the number. This is your starting point. So, I just say this is your starting point. This is your number. Now, we want this number to go to normal. For the M protein or paraprotein, the normal number is 0. So, we would like the number to go to 0. That’s what we would like. Now, not everybody goes there. What does it mean? Well, for some patients, even if they don’t get there, it doesn’t matter.

They still do really well. For some patients, they don’t. Do I know, when I look at the patient? I cannot know. So, then, I don’t think that it’s very important because I pay a lot of attention to the things that I know that will impact.

So, whereas it is true that, for most patients, it is better for these M protein or these paraprotein to go to 0, there are some patients, as Tiffany said, that it never goes to 0, and they’re still doing great. And they don’t need anymore treatment. Some of them, they have the same number, zero point something, for years without treatment. So, it’s very difficult to say. So, I think it’s very important. The way I explain it is that we want this number to go to 0 if possible. If it doesn’t go to 0, then, we’ll talk about what to do, at that time, and whether we need to do something for your case or not because everybody is different.

And the people that have light chain disease, which is measured through the light chain test, then, I just go and say, okay, this is the light chain. This is what you have. We want this number to go to normal. Normal is around 10 to 20, something like that. We want this number, which is the ratio, to go to around 1, 1, 2, 3, something like that. And that’s our goal. That’s what we’re going to try to accomplish.

And then, when this number—I don’t go and explain all of this and MRD in the first visit because it’s too much. It’s just a lot. And patients with myeloma, they become your friends because the come to see you really every month. You see them all of the time. So, you have so many opportunities to talk about those things in follow ups that I just say the goal is to get you better, get those numbers reduced. And then, we’ll go and see from there. And then, in subsequent visits, then, we discuss, okay, well, guess what. This number is close to 0. Or we’ve done already a few months of treatment.

How about we do a bone marrow biopsy, and we look at minimal residual disease. And then, I discuss that. So, that’s usually how I do it. We break it down a little bit. And I don’t go into so much detail. But the patients always have all of their results. I usually give all of the results to my patients, so they can process them. They can look at them. They can become familiarized with them. I think it’s very important for patients to know what they’re looking at, what results they need to be aware of. And so, I certainly point to that probably at every single visit for every patient.

Andrew Schorr:
Okay. Cherie, what were some of the test results that you were following closely for you to feel how you were doing?

Cherie Rineker:
So, for me, I never had an M spike. And so, I guess that means I didn’t have the heavy light chain. Did I get that
correct?

Dr. Manasanch:
Yes, that is correct.

Cherie Rineker:
Okay. So, I never had an M spike. I believe my kappa light chain started out in the tens of thousands like 17,000, and my Bence Jones was around 8,000. And so, I was very afraid of chemo. I did my first month of lenalidomie (Revlimid), dexamethasone (Decadron) and bortezomib (Velcade). And my kappa light chain, actually, went up, after the first month. But we had a little accident at MD Anderson.

I had not put the lid good on the 24-hour urine. And my husband picked it up, and half of it ended up in his shoe, which got him very upset. But when we went to Dr. Lasky the next time, Dr. Lasky kind of gave me a high five on the Bence Jones. He said, “I don’t understand because your kappa light chain had jumped like 1,000.” He said, “But your Bence Jones went in half.” And I was very out of it. I was on a lot of medicine, at that time. And as an afterthought, I said, “Well, we did lose half the bottle of urine.” I told him the story. And I remember the look on his face went from, okay, this is a good thing to concern.

And looking back that little accident actually probably saved my life because being a holistic practitioner and being so afraid of chemo, probably had I known that both of the numbers had gone up, I probably would have said I’m not doing this anymore.

See, I’m right, and chemo is not good, and we’re going to stop it. So, the next month, the numbers slowly started coming down. They didn’t do a bone marrow biopsy for me. Well, they did one, and it was inconclusive. And then, they did another one, nine months later, before my stem cell transplant, which then showed 80 percent in the bone marrow. And I had asked Dr. Lasky what is a good way to go into the stem cell transplant. And he said, “We like patients to be between 0 and 5 percent.” So, needless to say, when I heard 80, I was pretty…

Andrew Schorr:
…you had quite a journey. So, we’re going to take some questions, in just a minute. Caroline has already sent one. Caroline, stand by and send them to myeloma@patientpower.info. So, Tiffany, some of the testing is to see what subtype of myeloma you have. Dr. Manasanch was talking about that.

Do you have this type of myeloma or that type of myeloma. So, some of the testing is related to that. So, is that sort of
step one is to see what’s your myeloma and how do we measure that? Is that where you sort of start?

Tiffany Richards:
Well, when you’re looking at an M protein, you do have to know what type of myeloma that they have. And a lot of patients, particularly patients who are active on blogs and support groups and stuff, always want to know what type of myeloma do I have. And so, the immunofixation will tell us what type of protein is being produced. So, whether it’s an IgA kappa or an IgG kappa, or in the case of a urine protein electrophoresis, it will tell us if it’s a kappa or a lambda. And then, we look at the M protein as well.

And I wouldn’t say there’s a Step 1 that we look at and then a step two because I think, when you’ve been doing this for so long, it’s more fluid than that. But that’s what patients want to know is what type of myeloma do I have.

Andrew Schorr:
Okay. And then, just to be clear about the MRD testing, which becomes more and more sensitive, is that really kind of later in the process to do the MRD test? Where does it fit in?

Tiffany Richards:
Yeah. So, usually, the MRD testing is not going to happen, until the patient is in a good remission. And so, generally, if the patient has achieved a complete remission, or if they have a small amount of residual protein, then, you may consider doing it. It really depends on the patient situation and where they are, in their journey.

Andrew Schorr:
Okay. What about do it more than once? Do you get a remission, but then, later somebody comes out of remission? And later, would you do it again?

Tiffany Richards:
Generally, for a patient who is not on a clinical trial, at this point in time, we may recheck it. But for the physician I work with, we, generally, won’t recheck it because, at this point in time, it’s not like we would change—so, if a patient is on maintenance, lenalidomide, for example, and they achieved an MRD negative, and now, they’re MRD positive, but everything else is still looking okay, their numbers aren’t changing, we wouldn’t necessarily change treatment, at that point.

And so, it’s really going to be patient dependent. Sometimes, you’ll get them once a year, but, again, we don’t necessarily change treatment because a patient went from an MRD negative status to an MRD positive status.

Andrew Schorr:
Okay. Doctor, do you have a comment about that, about how often do do MRD or when?

Dr. Manasanch:
Right now, if you are on a clinical trial, the clinical trial, basically, tells you when you’re going to test for this. If you’re not on a clinical trial, I’ll tell you when I do it. And I think also, a lot of physicians do it at MD Anderson, which is usually before our stem cell collection.

So, newly diagnosed patients, they come in. Okay, yes, we confirm this is myeloma. This needs to be treated. They get treated. The response rate for the treatment of multiple myeloma right now, with the therapist that we use at MD Anderson, the response rate is 100 percent. So, basically, everyone, maybe 1 patient in 300 doesn’t respond. So, we can say response rate is 100 percent. So, all of them are going to respond or almost all of them. And then, we get ready. Most of the times, most patients actually, in our center, about 80% of newly diagnosed patients choose to do an upfront autologous stem cell transplant, which means that they need their cells collected.

And they proceed to get high-dose melphalan (Alkeran), which is the medication that is given with that transplant process. And so, we check the bone marrow to make sure that, actually, we’re not going to pick up a lot of bad cells with the stem cells.

We check the bone marrow because we also want to have a good response, whatever response you have, usually, before a transplant. The marrow transplant outcome, again, for most patients, but generalizations do not apply so well to individual patients and their cases. So, every patient is different. But, usually, we check the bone marrow biopsy, before we do the stem cell collection. And then, the bone marrow biopsy, after treatment, usually includes a minimal residual disease testing. So, that’s definitely something that we kind of consent to do at MD Anderson.

After that, it really is physician dependent. And it’s also patient dependent. So, all of us have a patient who wants to have a bone marrow biopsy every year and have minimal residual disease testing and seeing is it coming out of remission or not. Right now, there is no evidence coming from a clinical trial that that’s going to add any benefits.

So, for example, doing a bone marrow biopsy once a year to see the minimal residual disease, whether it’s positive or negative. We don’t have information on that. However, from our experience, I believe that we will be doing this in the future. So, patients will get minimal residual disease testing in the future. And that will determine what we do with treatment. Why? What Tiffany said. First of all, it’s common sense. It’s a little bit of common sense. But all of the studies, all of the evidence that we start having from clinical trials will be showing is that the earlier you know and the earlier you do, the patient seems to have better outcomes.

And that translates to smoldering myeloma, hopefully. So, now, I keep hearing more and more stronger voices about
maybe treatment of that. So, that’s a big area also in myeloma. Why?

Because, as Tiffany said, they use the paraproteins, the electrophoresis, the M proteins. And then, they have the light chains. And the chains are a little bit more sensitive. So, then, now, we don’t wait. So, the patient has a paraprotein, an M protein, of 0.0, and then, we don’t wait for that paraprotein to be 1, if the light chains are high. If a patient has the light chains are going up, we treat the patient, if they’re consistently going up. We don’t want for the paraprotein to be a certain number. So, I feel like a minimal residual disease would be something similar.

I feel like patients who will have the minimal residual disease, if they’re minimal residual disease is negative, they will have the testing done. And if we see that that starts to change, maybe the frequency of the MRD is increase. So, now, instead of doing your minimal residual disease testing every year, now, because it turned from negative to positive, now, we’re going to check it again in three months.

And guess what, if, in three months, that’s also higher, then, maybe you change the treatment, or maybe you start treatment. Now, that’s in the future. That’s what we are hoping to achieve, with all of this. And I think that a lot has done in the last few years. I believe that the Food and Drug Administration, the FDA, will actually approve minimal residual disease as an end point for clinical trials. So, basically, the response how drugs are going to get approved is not going to be just, if your remission is longer or if you live longer. But if you get drug A versus drug B, in a clinical trial, what is the percentage of patients that are minimal residual disease negative. This is going to happen. And so, right now, the use of MRD, I think, has either been limited to when we do our bone marrow biopsies in patients after treatment and the significance is prognostic. So, overall, for most patients, if you’re MRD negative, it’s better than if you’re MRD positive, again, for most patients. And that’s all that we can say right now, today, is prognosis. But in the very near future, I think that we will do things like changing treatment. Maybe we’ll do things like stopping treatment. I don’t know. But we have a lot of studies that are looking at this right now. And they will report, in the next few years. So, this is where all of this is going. And right now, MRD is limited, I think, it prognosis. If you want to know your prognosis. And then, if you’re MRD negative, and you have to have it tested every year, you can. There’s nothing against it. What do we do with the information, if it turns positive?
It’s a little bit ahead of the time where we have full answers. But it depends on the patient and the physician a lot.

Andrew Schorr:
Okay. This was a very complete answer. So, questions are pouring in. So, we’re going to start getting a lot of questions. Just so I understand, so the MRD testing today is only from the bone marrow, or can it be done from the peripheral blood, too, doctor?

Dr. Manasanch:
That’s a great question. Right now, it’s only from the bone marrow.

Andrew Schorr:
Okay. But that may change.

Dr. Manasanch:
That may change. We, actually, have a study here at MD Anderson that I hope is going to be starting by the end of the year, which is going to be looking at something called the single cell assay, looking at, basically, each myeloma cell in the blood and doing very complete analysis, anomic analysis, something called proteomic analysis, looking at how the different cells are a little bit different. I think that, in the future, we probably will be able to do a blood test. We are not close to it yet. So, I don’t think, as I tell you, MRD, FDA approval for regulatory trials, I think, it will be soon. MRD testing, for the treatment decisions, soon, sooner rather than later. Maybe a test in the blood, maybe not so soon. So, maybe a few years.

Andrew Schorr:
You need a crystal ball. Okay. So, Tiffany, I think we’ve been talking about when MRD testing is typically done or when could it be done. And then, so Matt says, “What about the cost?” So, how do you guide people. Where does the cost come in, Tiffany? What are the costs of MRD testing?

Tiffany Richards:
Yeah. So, I know that Medicare will now pay for MRD testing, but that doesn’t necessarily…

Andrew Schorr:
…you said they will pay for it?

Tiffany Richards:
Yeah, for the clonoSEQ, they will pay for MRD testing, Medicare will. Whether or not other insurers, I have not heard from any of our patients that they’ve had difficulty or that they’ve had denials or that they’ve had to pay out of pocket. So, I think, by and large, insurers are reimbursing.

Andrew Schorr:
Okay. Now, some of these questions, folks, I don’t have myeloma, so I’m not as well versed as some of you, but let’s do
this. Matthew asked, “If you have M protein 0.1 or 0.2, should you get MRD testing?” And otherwise, you have negative numbers. So, Doctor, he’s wondering, with a 0.1 or 0.2, the M protein, should he have MRD testing?

Dr. Manasanch:
It depends. So, a patient that has—so, just a generalization. A patient who has very little paraprotein in the blood, assuming this I like a regular myeloma, most of the myeloma types that have both the heavy and the light chain. And then, you have 0.1 and 0.2. So, the response for these type of patients is usually what we call a very good partial response. Why? Because most myeloma patients that have this type of myeloma, the M proteins or paraproteins, they’re in the range of 3 or 4 or 5 grams, when they start. So, by the time they reach 0.1 and 0.2, that’s already more than a 90 percent decrease. And that’s what we call a valuable partial response. So, if you have a patient—if you’re a patient, and you know that your response is a very good partial response, does it make sense to test for minimal residual disease for prognosis?

It makes sense, for what I mentioned. Actually, if we look at the patients who are in very good partial response, and we look at MRD positive or negative, the patients who are negative tend to do better, in terms of how long their remission will last. So, if you have—you are in very good partial remission, and you want to know if this test if the clonoSEQ or if the flow is going to find any myeloma cells or not, if it does not find any myeloma cells, if you do not have myeloma cells that the test can find, that’s usually better than if the test finds some for patients in very good partial response.

So, what happens is do you want to test for it in partial response. Well, let’s say it’s not 0.1 or 0.2, the protein is 1.5, it can still probably predict. But, at that range, most patients be positive. So, it really starts to make sense, when you have very little in the blood, very little protein in the blood, and a very good partial response or very good partial remission range or complete remission. That’s when you can actually discern. If you test diagnosis or if you test partial remission, most patients will be positive. So, you can test, but it’s going to tell you what you already know.

It’s positive. So, then, what’s the point. So, for this patient, if it is a very good partial response, if the response is a very good partial response, it makes sense to, basically, talk to your doctor and say, okay, is this something that we need to do or not. Because it’s only prognosis, it’s really just to know. It’s not going to—it’s probably not going to change.

Andrew Schorr:
I think Matthew wants to know, and I’d want to know, too, because you have those very low numbers. I think, to get our head on straight, wouldn’t you agree, Cherie, you want to know?

Cherie Rineker:
Yeah. Just for peace of mind.

Andrew Schorr:
All right. Let’s get to some more questions. So, Valerie wrote in. She said, “If I’m declared MRD negative, is there still a need to take maintenance therapy indefinitely?” So, Doctor, do you want to take that one?

Dr. Manasanch:
So, the first thing is that my first inclination to that answer is, right now, we’re November 19, 2018. So, as of November 19, 2018, today, yes, you have to continue, even if you are MRD negative because being MRD negative, all it means is that the test cannot find the cells. But we have a problem in myeloma. We have a big problem in myeloma. And in myeloma, we really cannot seem to cure it, for most patients. Which means we cannot get rid of it. It’s still there. So, our worry, when patients come out of therapy, especially if they’re doing well with their therapy, right, it doesn’t have a lot of side effects, and they want to come off of it just to come off of it or because you’re MRD negative, the problem is, okay, what’s going to happen.

So, I actually had plenty of patients to where complete remissions, MRD negative by our flow cytometry, and I’ve taken them off therapy because they’re older patients. And this is relapse because there’s really, it’s the discussion because they’re coming, and they’re not doing well.

They get admitted. They have infections. They are not doing well. So, then, okay, well, everything looks good. Let’s give a break. And the myeloma comes back. And then, you treat it again, and it goes into another remission. And then, it comes back again. So, being minimal residual disease negative, in relapsed myeloma, you still need to treat it.

Andrew Schorr:
Okay. There’s an elephant in the room here, though. Cherie, so with this 10 to the 6, you’re negative. The most sensitive test available. You’ve had the leading edge of treatment, CAR T, and yet, you’re hearing the doctor say we don’t think we are able to cure myeloma and that it may come back. So, you’re hearing this. What are you thinking?

Cherie Rineker:
Well, I belong to a CAR T Facebook group. And, sadly, there are people who have relapsed. There are people that have passed since relapse. And I have pretty severe post-traumatic stress syndrome, from everything that I’ve gone through from the many relapses. And so, I’ve noticed the further out I get, the worse my anxiety is getting actually not being on any treatment. So, hearing this, again, I feel that, at this point, maybe I want to go on maintenance. But I think it would disqualify me for the trials. And I want to be part of helping the CAR T research. At the same time, I can’t fathom the thought of having to go through another relapse.

And for me, even though the numbers are really small in the end, the plasmacytoma 9 centimeter, which popped out of nowhere, within a month, the cancer was so aggressive. So, would you recommend, doctor, that I should pursue a maintenance regimen?

Andrew Schorr:
But you’re in the trial though to see how long it lasts though, too.

Cherie Rineker:
Yeah.

Andrew Schorr:
Well, I think I’m just going to comment on this. First of all, I think Andrew’s question, so this maintenance usually applies to newly diagnosed patients, right. But I made my case with relapse because what happens, newly diagnosed patients, usually, the therapists we have now are so good. Most of the patients do really well, right. I think that this is the main thing of the webinar is patients with myeloma do really well right now. I think this has to be that, most patients do, okay? Once the myeloma has come back, and it has come back a few times, it just takes less time to come back.

So, my experience with doing minimal residual disease testing has been that. You can have somebody who has relapsed myeloma who is MRD negative. That does not mean that they’re always going to stay like that. But that also doesn’t mean it has to com back. I’m just saying that it can be either way. But for maintenance like after transplant or maintenance after your initial treatment, when you’re doing just continuous therapy, probably the right thing to do is to continue, even if you’re negative, continue that therapy because we really don’t know.

We don’t have data. There are studies now where, if you are MRD negative, they stop the therapy. And if you’re positive, they continue. Right? And, in fact, you’re negative, some patients stop, some continue. So, basically, we’re going to see, in the next few years, if you can stop it, if you’re MRD negative, if you can stop the maintenance. But right now, there’s no evidence, specifically, for your case, after CAR T. There is no evidence, right now, that starting therapy will make it last longer. So, probably , you don’t have to do anything. But for the newly diagnosed patients who go on the maintenance, they’re negative. Basically, that’s not affecting how we treat. It’s just an information. It seems like that’s a very good prognostic factor. But whether we have to stop the maintenance, that’s up in the air. And for most patients, I would probably say don’t stop it. Continue it. until we have at least some studies saying that, okay, if you’re negative, you can safely stop it. That’s what I would do. I’m just going to play a little bit devil’s advocate.

Andrew Schorr:
I would just say that, for me, just listening, there’s an old phrase don’t mess with success. Right now, you’re living your life. You’re going to go from—when you’re in a trial, part of the thing with the trial is to understand how long can you have this. Here’s a question we got in from Darrell. And, doctor, I think you answered this, but I just want to make sure. So, he said he did have a very successful CAR T, and all markers of disease in the bone marrow were zero. PET scan analysis, no evidence of rival disease. But the M spike, after 90 days, has remained 0.1. Is it possible, and I think he said this, that the M protein just takes a little while?

Dr. Manasanch:
It’s possible. It’s possible that maybe there are some cells that are making that M protein somewhere. But, again, as
long as the cells don’t get worse, who cares? If you have an M protein of 0.1, and that’s not making you sick, and it’s
going to stay 0.1 for 10 years, that’s not going to kill you. An M protein of 0.1, that doesn’t get worse. So, the key here
is, if you stay there, that’s okay. The problem is, if it goes from 0.1 to 0.2 to 0.4 to 1.0, That’s when we get into trouble.
If, for some reason, there is the balance of your body or immune system is just letting some cells be there and make a
little bit of protein, and that’s it, that’s great.

That’s all you need, to not get into trouble, with the myeloma. So, that’s possible, of course. You can have everything negative and a little protein, and the light chain is a little bit high. That happens. But it could just be that it’s just lingering a little bit longer. It could be that there are some cells making it that are not doing much. It just has to be followed.

Andrew Schorr:
Okay. Just to be clear, Darrell asked a follow up question. After CAR T, then, why not start a maintenance treatment,
even if you’re MRD negative? So, is that what is the protocol for the CAR T? Or what are you doing at MD Anderson?

Dr. Manasanch:
Well, that’s a very good question. I think that’s probably like the next generation of studies, with CAR T. So, right now, when we design clinical trials, you have to, basically, make an end point, right? So, what’s your goal, when you do a study? What do you want to prove? What are you trying to say about this?

And they do studies with CAR-T cells really mostly have two end points. One is safety. So, make sure that you’re going to give the cells. People are not going to die from toxicity. They’re going to actually going to be able to go through with this. And then, the second one is how effective is this, so what are the responses? How long does it take after a response for the myeloma to come back? So, those are the main things. So, if you do a CAR T, and then, you put a therapy right after, it’s very difficult to isolate the effect of the cell therapy. So, you, ideally, want to do a study with cell therapy that is just a cell therapy.

Now, once we have established that this cell therapy is safe, and the CAR Ts are safe, and they are effective, then, the
next generation of studies is you can add things to it. Usually, we have to build on things. So, you have to have a basis.
So, right now, there are already studies looking at comparing CAR-T cell to standard therapy.

So, for like patients that are not just relapsed after 10 lines of therapy, patients that have relapsed a little bit sooner, maybe like second lines, first or second relapse. You can get CAR T, or you can get another therapy. And then, basically, this is something that has to be studied. There is no data, right now, that I’m aware to do any therapy after CAR T cell. So, that’s why people don’t do therapies because we have not gotten to it yet. So, that’s a good question. Somebody is probably doing a study right now doing therapy after CAR T cell. But I have not seen any results from any studies like that.

Andrew Schorr:
Tiffany, here’s a question that came in. This person, they’re anonymous, don’t know if it’s male or female. I’m 55 years
old, and I’m MRD negative after 1.5 cycles of treatment. My doctor wants to do stem cell collection but possibly not yet the transplant. Does MD Anderson ever skip the stem cell transplant and just freeze the cells, just wait?

Tiffany Richards:
Yeah. Certainly, there are some patients that we do that that, if they are MRD negative that would be a possibility. But, again, I think that’s a discussion with your physician because there’s a lot of other factors that come into play, such as what are their chromosomes, are they high risk, standard risk, their level of presentation, what the PET looks like. And so, it’s really going to be patient dependent.

Andrew Schorr:
Okay. doctor, here’s a question, and maybe you can decipher this for me because I’m not that familiar with it. Nicole writes in what is your experience with the presence of only oligoclonal bands? Can it ever be a band sign? I’m nine months out from stem cell transplant. And the M protein went from 0.06 to the bands in the last one.

Dr. Manasanch:
So, oligoclonal means that it’s normal. It’s like your normal immunoglobulin. So, that’s usually a good sign. It means usually the sign of deep remission. So, that’s a good thing. What that means is you probably have a deep remission, which is usually either very good partial remission or a complete remission. And what it means is that you’re normal, you’re actually starting to have normal plasma cells in your bone marrow that are actually making normal immunoglobulins. And so, the pathologist, when they look at your electrophoresis and your immunofixation, they’re seeing that there are normal immunoglobulins. And they just say, okay, we see some bands in this test. And these are probably just normal bands. So, that’s a good thing to have.

Andrew Schorr:
Okay. Tiffany, so, we’ve been talking a lot about CAR T. And I just want to help everybody understand what it is because it’s been very much in the discussion of myeloma for people like Cherie who needed lots of treatment. How do you explain CAR T to people?

Tiffany Richards:
It’s a good question. What I explain to them is that because a lot of patients have already had stem cells, so they’re familiar with having their stem cells collected. So, I tell them it’s similar to that, but we’re going to collect your T cells. And T cells are a type of white blood cells. And those cells will then be collected and sent to the company where they will manipulate the T cells to go after the myeloma cells. And that they will get chemotherapy prior to having their stem cells reinfused. And then, their stem cells will be reinfused. So, a lot of patients, they’re pretty familiar with it because they’ve all had stem cells.
So, they get chemo. And then, I’m going to get the stem cells. And so, that’s usually how I explained it. I try to keep it pretty simple, for them, because it’s quite a complicated process.

Andrew Schorr:
Right, okay. And so, where are we now, Cherie? You went through it. And so, for you, it was kind of the leading edge because you, I don’t want to say you failed the treatments, the treatments had failed you. And so, this was really your last hope, right?

Cherie Rineker:
Yes, it was. The last time I remember going to MD Anderson and talking to my oncologist, and he said, “Well, we can now go to four different medicines, instead of the usual three.” And he’d had a couple of patients, and it seemed successful. And I just knew my trend. And, at that point, I needed monthly platelet infusions and filgrastim (Neupogen) shots constantly. So, it was both the chemo and the cancer were destroying my body. And I had heard about CAR T. And I said I’m done with chemo. I want to really pursue the CAR T, which, sadly, at MD Anderson, they started it I think a week after I had my cells returned to me. So, it’s been a 14 -our flight or $500.00 ticket to…

Andrew Schorr:
…there’s an element, as these trials open up. So, I just want to go—first of all, we do have time for a few more questions. So, send them to myeloma@patientpower.info. And I mentioned Caroline a long time ago. Caroline, I didn’t want you to feel lost. So, let me see if I understand. She says, “How will knowing disease state or using MRD measurement technology change treatment plans?” So, Doctor, I just want to understand. So, what do you do with the information? So, somebody says what’s the prognosis, is it changing what treatment you use or when, based on the MRD results?

Dr. Manasanch:
We don’t have any evidence to change treatments. So, these are all questions that need to be answered, in the next few years. So, the question of, if you are in complete remission, MRD negative, and then, you get another test done, and you go from negative to positive, do we start treatment, if you are not on treatment? If you were on treatment, do we switch it? All of those things, and how often do we test for it. We don’t have an answer for those questions. We really don’t have a guidance for that. So, it’s really just, when we test for it here, it’s just so because the technology is available.

And we know that it’s prognostic. So, we know that patients that are negative, they seem to do better. So, it’s nice to have the information, but there’s not much that we can do with it, right now, except just make someone happy telling them this is already negative. But there’s not much that you can do with information. And that’s why Tiffany was saying, Dr. Weber, ewe don’t do it, unless—we test after treatment.

And every time after treatment, we test for it. And if it’s negative, okay, we know that’s the best level of remission that we have. But what does it mean, in terms of treatment? We don’t know that. So, a lot of centers don’t even do MRD.

Andrew Schorr:
Okay. Yeah. So, that’s my next question. So, we have people all over the world watching. So, Cherie has been a patient of MD Anderson. She also went over to Nashville. They have a big center there. These are major centers. But a lot of people are treated at not such a good place or maybe not even with a hematologist/oncologist who has a big myeloma practice. And we’re talking about very sophisticated testing. We’re talking about 10 to the 5, 10 to the 6, super sensitive testing. And you’re saying well, what would we do differently?

So, should people watching, Tiffany? If somebody said to you, I live somewhere else in Texas, but I come to MD Anderson—but should the local level, in Lubbock or someplace, should I be lobbying for MRD testing? Tiffany, what do you say? I want to get the doctor’s response, too.

Tiffany Richards:
That’s a good question. It’s also a hard question because, for me, I always go back to, if you have a test, is it going to change what you’re doing? And while MRD status is good to know, I always also go to the flipside. If a patient is told they’re MRD positive, how are they going to feel, after that result. And then, if they’re in a community practice where they’re seeing an oncologist who maybe doesn’t see a lot of myeloma, and now, you have this patient who feels totally deflated because they’re MRD positive.

They go and they look on the internet. And they see, oh, my gosh, my prognosis is worse. And so, what happens, in that scenario? And so, I feel like we shouldn’t leave patients out there who are going to be feeling deflated, without being able to pick them back up and give them hope. And if they’re not in a place where that can occur, then, maybe it’s better not to do the testing. But, again, I think the patient’s situation and having the patient have that discussion with the oncologist is important. But I certain feel like a patient should be able to also have hope, if they do come back MRD positive.

Andrew Schorr:
Doctor, what do you say? Again, you do MRD testing, at certain points, because—and you’re also doing research with your colleagues around the world trying to figure out where does it fit in, and what do you do about it. But that’s not always happening, at the community centers. And they’re not doing that research. So, just for our worldwide audience now, what do you want to say about MRD testing? And I’ll just say for me, and I think, Cherie, you agreed, I want to know, personally.

Cherie Rineker:
Yeah.

Dr. Manasanch:
Most patients, when given the option, they prefer to know. I think, for patients though, one thing that we try to have a community of oncologists and practices. And our own techs actually send their samples here, so we test them here. And it just turned out to be something that was logistically not feasible to do. So, we’ve tried to do this, so that people that cannot come here, their oncologist can send the samples. And the physicians will be happy to do it. But, in terms of our lab, the volume and all of this, it’s just not practical.

So, this is not something that we could achieve. Now, for the community oncologists, community oncologists, usually, they don’t test. They don’t do advanced flow cytometry. So, minimal residual disease testing requires advanced flow cytometry, which is like a new generation where you have some machines that can test many cells, at the same time. You need to have some software that can do that. You need to have someone who is very experienced. If you don’t have a very experienced pathologist reading this test, they’re going to result in tests that are not correct. And that could be an issue.

And so, I think that, if you don’t have the technology to do it, it’s better just not to do it. I think that, when we start changing treatment with this, I think that everyone will open up to it more. I think that it’s very good that the FDA has approved the clonoSEQ test to test for minimal residual disease because I think that’s easy, so the community oncologists can send the samples to Adaptive Biotechnologies.

And they can test us and give our result back. And now, the advantage of—so, that’s, basically, what I would say to these patients. But let me just add something to that. So, basically, if you don’t have it, don’t worry about it. If you really want to have it, and your place doesn’t offer it, you have to go somewhere else because, if where you are, they don’t have it, it’s better that they don’t do it because it’s complicated to get set up. It’s not easy. But now, if you compare flow cytometry to sequencing, so that’s DNA sequencing, DNA sequencing seems to be better.

And so, this clonoSEQ test, the advantage of this test compared to flow cytometry is that, with this test, you can look at different populations of myeloma, within the same patient. So, if you send these tests on diagnosis, they’re going to tell you, okay, 80% of the myeloma has this. And then, the rest, 15 percent, looks like this, and 5 percent looks like this.

And it’s going to tell you that. Whereas the flow cytometry doesn’t tell you that. Now, this test can be done, the sequencing, can be done on almost any patient. Flow cytometry can be done in every patient. So, some patients may not be able to do the sequencing, with the new generation of the sequencing test, the clonoSEQ. Every time, they can read more and more patients. But those are the main limitations. The main limitations of flow cytometry is it cannot inform you on the biology of the myeloma, in terms of how many different myelomas are there, sub myelomas are there in the myeloma.

So, that test cannot inform you of that. But some patients may not be able to do it. Whereas the flow, you can do it in everybody, but it’s not going to tell you about the subpopulations of myeloma. So, those are two tests that are, basically, used for right now.

Andrew Schorr:
I take away as sort of the common man here a couple of things. One is, and we’ve said this on so many of our programs. Cherie, I’m sure you agree. First of all, if you’re living with myeloma, I, personally, think you may want to check in or get a second opinion at a major center, whether it’s MD Anderson or one of the others. And I like the full work up. The other thing that’s going on is the testing continues to advance. So, if I got you right, you’re talking about one person having almost little subsets of myeloma with their own blood, right? Not just one myeloma, but different types. So, it would be super sensitive. Then, the question is what does it all mean differently now that you know. This is like crazy-making. So, it’s kind of like, first of all, have a team that you trust. And recognize, thank God, wouldn’t you say, Cherie, that myeloma patients, in your wonderful example, are on a much longer journey now than ever before You’re such an example of that. And so, this discussion, you’re kind of flowing with your myeloma. Hopefully, it doesn’t come back, but if it does, the testing is going to be more sophisticated. The treatments are going to be more tailored.

Cherie Rineker:
Yes. If I may say, too, when I was first diagnosed, I found out I had multiple myeloma, which I was told was a tradable yet incurable disease, at 44, that’s pretty devastating news. I thought, if I get cancer, you’re going to treat it aggressively. I’m going to go bald for six months or a year, and then, my life goes on. That’s what I thought about cancer. So, to have something that continues on and on is pretty tough to live with. Hopefully, getting to an older age.

And for me, the journey has been both physical healing and emotional healing. And physically, I’ve gotten better and better through the years, now, thankfully, after CAR T especially. But, emotionally, too, that is a lifelong commitment and exercise of trying to stay in the now, trying to stay positive, trying not to have multiple myeloma at the forefront of my thoughts, in everything that I do. And I think MRD negative has played a huge role for me because it has given me some piece of mind that, even if I’m going to relapse, maybe it will be longer. And, hopefully, I’ll stay in remission long enough for another trial to come along for me.

Andrew Schorr:
Yeah. Well, we’ll pray for you exactly that. And I hope so. And I know many of the people watching, and I’ve met a lot of myeloma patients over the years, I’ve been doing these programs since the mid ‘90s.

And, certainly, we’ve lost some people. But so many people are doing better. And there was another treatment waiting for them. And there are others waiting for approval now or close to approval, as we head towards 2019. So, I think learning what’s the right testing, what does it mean, what treatments line up with that, when CAR T, understanding the longevity of that, or who does it work for. And I will just put in a plug for a big meeting coming up. The American Society of Hematology meeting is here in my home county, San Diego. You’ll probably go, Doctor, Tiffany, I’m not sure are you going this year. It would be great to see you.

And so, these studies we’re talking about, trying to answer these questions, it comes out at meetings like that. And there will be a lot of discussion. Who is CAR T right for? What more do we know about MRD testing? When do we do it? What do we do differently because of it? Doctor, did I get it right?

Dr. Manasanch:
Yes, yes, great.

Andrew Schorr:
So, we will be reporting, and my wife Ester and I will be doing some daily wrap ups on the Saturday, Sunday, and Monday of ASH. So, if there’s news about that, we’ll be talking about it. But I think here, we’ve given you a good baseline of where understanding is. So, as we get close to the end here, Tiffany, so people have been listening for 90 minutes. We have a couple of hundred people who have been listening and more. How do people get their head on straight on where this testing and the range of treatment fits better for them? Tiffany, so just help us. Like Cherie was saying, it’s the emotional part of it, with this moving target of myeloma.

Tiffany Richards:
I think I would just tell patients have a discussion with your team about if it’s appropriate for you, at this moment, or if it would be appropriate, in the future. And I think that all of the different response criteria in MRD, I think it’s one of those things that it’s not just going to—they’re not going to be able to really understand it, after just one discussion. I think it’s a continual discussion. And so, I would first say let’s just take it one step at a time. Are you in a very good partial remission? If you are, then, it would be a time to have that conversation about MRD testing or not. If you haven’t gotten to a very good partial remission, let’s just focus on getting you there, rather than looking at the whole entire process, all at the same time.

Andrew Schorr:
Yeah. It’s a lot. And I think, for the family members, often, not Cherie, and not when I was diagnosed with leukemia at 45, that for somebody where, if you’re in your 70s or maybe 80s, and you’re dealing with myeloma, you may have an adult child or a friend helping you make these decisions.

And you feel like you’re kind of drinking from the fire hose, as the treatments have become three, four treatments together, or CAR T, or tandem transplants, or all of these kinds of things, and then, all of the different tests. And the kappa, lambda, and M spike and bands and MRD, it’s a lot to drink in. And you don’t have to feel overwhelmed. How have you—Cherie, would you say knowledge is power? Or having the right healthcare team is part of it? How do you cope when, thank God, there’s more going on in myeloma than ever before?

Cherie Rineker:
Yeah. Knowledge is power, absolutely, a good team that I have at MD Anderson that has been phenomenal, friends’ support.

And knowledge can be a double-edged sword, too. When my last test results came in from MD Anderson, actually, last month, I was so scared to open it because having achieved MRD negativity now, I’m so afraid that the next test is going to show I don’t and that I’ll fall back in that whole thing again. So, like I said, the mental staying mindful and staying positive and just believing in your doctors and your team and knowing that there will be something else on the horizon that can prolong our lives.

Andrew Schorr:
Yeah. And I will tell you, there is a lot going on. But what you know now is you’ve got the little dog that wants your attention. And you’ve got your kids that want your attention. And you’re feeling good today, right?

Cherie Rineker:
Oh, absolutely. Absolutely. I’m beyond grateful. I truly believe that, for me, it was a miracle. I was in a wheelchair last year, and now, I’m out teaching yoga again, incredible.

Andrew Schorr:
Okay. I want to mention that, if you go on the Patient Power site but also on some of you on Facebook groups or whatever, Cherie has written a lot about it. Cherie, what’s the name of your book?

Cherie Rineker:
I have a book, “A Pilgrimage Without End, How Cancer Healed My Broken Heart.” And that kind of ends at when I, in 2016, when I started daratumumab (Darzalex). And I thought that was going to be the end, and I was going to be on that indefinitely. Since, a lot has happened, obviously. So, I’m working on another book now, “Pilgrimage Towards Health, Keeping Hope Alive.” So, I hope sometime in 2019 that will come out. And yeah, now, I’m just advocate and activist and take a lot of questions. Never the doctor questions but more the emotional support that I love to give.

Andrew Schorr:
And raising money for research.

Cherie Rineker:
Yes, I did, for MD Anderson last year, for my 50th birthday, yeah.

Andrew Schorr:
Thank you. Well, we’re so glad that things have worked out. So, doctor, just to wrap up then, this MRD testing that we’ve talked about a lot, along with the other test, is sort of a moving target, right? As is myeloma treatment algorithms, right?

Dr. Manasanch:
Moving target, yes.

Andrew Schorr:
Yes. So, the idea is that patients have the right team. And like you say, you see some patients every month. And it’s an active discussion, right? It’s an iterative discussion.

Dr. Manasanch:
Right.

Andrew Schorr:
So, put it all together though, Doctor. I always like to end this way. Are you hopeful? Because, in the end, what we want to take away as viewers is you’re our barometers. You and Tiffany are our barometers. Knowing what you know, and Tiffany, you said you’ve been doing it 14 years now, right?

Tiffany Richards:
Yeah, 14.

Andrew Schorr:
So, doctor, are you hopeful for those of us who are living with myeloma?

Dr. Manasanch:
Yes, of course. I think that—when I started doing multiple myeloma, all of my patients were doing great. So, this was like 2010, 2011. And it was on clinical trials at NAH with therapy that, at the time, was only given on clinical trials, from the therapy. Everyone was doing great. And I was thinking what is the big deal. Everyone is doing so great. How is this even possible? Like people didn’t used to do well. I think that people have to remember, studies coming out at 2003, the rates of very good partial response and complete remission with therapies, as of 2003, which is 15 years ago, was 10 percent.

And our rate of very good partial response and complete remission right now is, of course, if you do continuous therapy for a year, and most people are in very good partial response or complete remission. So, you went from 10 percent to most patients having it, so now, we’re doing great. I think that we need to figure out why, once we treat it, why it keeps coming back. And I think that’s something that we have not yet figured out yet. And there’s a lot of research trying to find out why. I think that patients will continue to do very well, definitely.

There’s a lot of hope, yeah, definitely. There are so many things that have been going on. There are so many new therapies that are working well. And, again, the self-therapies or the CAR, they’re just the first generation. There are people who are improving on them.

They’re adding things to it. And also, what happens if you give it to someone who has had 10 lines of therapy, but if you give it to someone without a diagnosis? What’s going to happen? We don’t know those things. What if you give it in patients before they develop myeloma? What’s going to happen then? Are you curing them? So, yeah, there are so many things that we can do, right? We don’t have enough—we need more manpower to do all of it. It’s a lot of work. We have a lot of work here, in our department. We have so many things that we want to do. And I think that it’s like the manpower because there’s so much to do.

Andrew Schorr:
Or woman power, there you go.

Dr. Manasanch:
Or women power, but there is so much to do.

Andrew Schorr:
Tiffany, I’m going to let you make the final comment. And that is 14 years there at MD Anderson, right?

Tiffany Richards:
Yep.

Andrew Schorr:
Working in myeloma.

Tiffany Richards:
Yep.

Andrew Schorr:
You’ve seen thousands of patients.

Tiffany Richards:
Yes.

Andrew Schorr:
If somebody comes to you today, obviously, you’ve got to figure out what’s going on. But would you say we can end on a hopeful message?

Tiffany Richards:
Oh, I definitely. So, when I first started 14 years ago, the drugs that were approved that we used—the drugs we had available was bortezomib, thalidomide (Thalomid), transplant, Vad, and melphalan. And that was what we had available to us. And
if you just look at the number of drugs that are now FDA approved for the treatment of myeloma, it’s really remarkable how many options that we have. And every day in clinic, it’s funny because we see these patients every month. And they really do become like part of your family. And I look, and I’ll be like, oh, my gosh, you came right around the same time that I started.
And I’m like oh, my gosh, that was 14 years ago. Wow. And so, there are most definitely reasons to hopeful. And if the
next 14 years are like the last 14 years, then, patients will do really, really well.

Andrew Schorr:
Okay. Amen. All right. I want to thank everybody with us from Houston, Texas today. Cherie Rineker, thank you so much. And all the best to you. Tiffany Richards, thank you. Elisabet Manasanch, thank you so much for being with us. We really explained this in detail. Remember, there will be a replay. And there’s a survey usually we have afterwards. Stay tuned for what we have coming up from ASH. I want to thank the Patient Empowerment Network for pulling all of this together. And I want to thank our financial supporters, Sanofi, Celgene, and AbbVie for supporting the myeloma community. I have a cough I get from a leukemia treatment. In Carlsbad, California, I’m Andrew Schorr. Thank you for joining us. And remember, knowledge can be the best medicine of all.


Please remember the opinions expressed on Patient Empowerment Netowrk (PEN) are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Myeloma Patient Cafe® July 2018 – Best Practices for Coping with Side-Effects and Symptoms

Cindy Chmielewski (@MyelomaTeacher) leads a panel of six patients diagnosed with Multiple Myeloma. The panel discusses the symptoms of their disease and some ways to cope and manage those side effects.


Transcript:

Cindy Chmielewski:
Hello, everyone, and welcome to the Myeloma Patient Café. We would like to thank our sponsors, AbbVie, Celgene, Sanofi and Amgen for their generous support.

Today we’re going to be discussing ways of coping with and managing side effects from treatment and some of our symptoms from multiple myeloma. Before we begin I want to make sure that you understand that this is in no way going to replace your conversations that you have with your physicians, but you could use this as a springboard to start some of those conversations.

I am delighted that today we’re going to be joined by other myeloma patients who have found some successful ways of coping with their shot side effects and are willing to share. So before we get started, let’s just introduce ourselves and tell us a little bit about yourself, where you live, when you were diagnosed, and maybe one or two of the two most challenging side effects.

My name is Cindy Chmielewski. I live in Laurenceville, New Jersey, and I was diagnosed with multiple myeloma in July of 2008. And some of the challenging side effects that I feel the most frustrated about are the fatigue that I have and chemo brain. And why don’t we go next to Sarah.

Sarah Frisbie:
Hi, I’m Sarah Frisbie, and I am from Nebraska, Omaha, Nebraska. I was diagnosed in November of 2011 after a hip fracture. My hip broke. And I think the most challenging side effects I’ve dealt with, probably digestive issues with Revlimid and some nausea, so that’s probably been the most.

Cindy Chmielewski:
Okay. Great. Lynn, how about you tell us a little bit about yourself.

Lynn Worthen:
I was diagnosed in a routine physical in April of 2010, and the doctor there confirmed the diagnosis. He was a GP, but he confirmed it and sent me to Little Rock, and so I started treatment there. I’ve had the routine side effects, the fatigue you talked about, no appetite, no energy, that sort of thing that all kind of went with the transplant phase that I had, but beyond that I wasn’t severely bothered by too many things. I didn’t have neuropathy. I didn’t have a lot of nausea. They gave me a lot of pills for that, and so those things worked pretty well.

I think‑‑I don’t know how everybody else had it, but they gave me 40 milligrams dexamethasone a day four days and stuff like that, and it was interesting to negotiate that. The lack of sleep, the retention of water. I gained 17 pounds in four days, you know, all that kind of thing. But those passed after a while when we stopped with the extreme level of dexamethasone and I got it out of my system. But pretty much the routine kind of side effects that people have.

Cindy Chmielewski:
Okay. Great. I can’t wait until we get into the conversation of ways people managed dealing with some of their side effects and negotiating their dosage of dex. Paula, how about you?

Paula Waller:
I live in central Virginia, and I was diagnosed in April 2014 and had a transplant in November of that year, did consolidation, and I’ve been on maintenance ever since. The first side effect I really noticed was some neuropathy, not the painful kind but the kind that’s more bothersome, numbness, just weird feeling. And I do have some nausea, which is now very well controlled that’s associated with (? Phonetic nemoro) that I take as part of my maintenance routine.

Cindy Chmielewski:
Okay. Jill, a little about bit yourself.

Jill Zitzewitz:
Yes, I’m Jill Zitzewitz, and I live in Massachusetts, and I was diagnosed in March of last year after a series of compression fractures in my spine. It took them a while to figure out what was going on, but once they did we got into treatment. And I think my major side effects have been still the back pain from the compression fractures. Even though they’ve healed I still wear out as the day wears on. I need to sit on my heating pad at the end of the day. And then the major one probably for me, I’m rashy girl. Every drug, I get rashes everywhere, and so that’s been a bit of a challenge to deal with.

Cindy Chmielewski:
Okay. Steve, introduce yourself a little bit.

Steve Simpson:
Yeah. I’m Steve Simpson, I live in Tea, South Dakota. We’re just outside of Sioux Falls, South Dakota. I was diagnosed in November of 2015. That was actually brought about through an MRI that showed up having six vertebrae that were pretty much completely destroyed by the tumor. Spent the next morning in about six hours of surgery and have gone from there.

Side effects, I’m going to say the worst ones are obviously neuropathy was a big one. Syncope was probably the biggest one I had to overcome, and then the digestive issue, I feel your pain on that one. That’s just not real enjoyable, but we’re getting there. So those are the things that‑‑that’s just a few of the many we have, but those are probably some of the big ones for me.

Cindy Chmielewski:
Hi, Melissa, welcome.

Melissa Vaughn:
Hi.

Cindy Chmielewski:
We’re introducing ourselves, where we’re from, when we were diagnosed and some of the major side effects that you have experienced.

Melissa Vaughn:
Okay. Want me to go ahead?

Cindy Chmielewski:
Sure.

Melissa Vaughn:
Okay, Melissa, and I was diagnosed 18 months ago, back in February of 2017. I have to think about that. And I’m from Dallas, Texas. And some of my symptoms were a lot of neuropathy in my hands and in my feet, some numbness. And I definitely had some spine issues as well, some pelvic lesions and so pelvic pain. And so I also have lesions in my hip and then I had a hairline fracture in my leg, so.

Cindy Chmielewski:
Okay. So it sounds like we have a lot of issues to deal with. Some of them are caused by the disease itself like back pain causing some of the compression fractures, and neuropathy I heard can be either caused by the myeloma or by the drugs that treat myeloma. And then we have side effects from the treatment itself.

Just to begin with, were you surprised by the side effects you were experiencing, or were you prepared to deal with them? Anybody want to‑‑

Steve Simpson:
I will. I don’t think you are because you really don’t know what you’re getting into.

Cindy Chmielewski:
Right.

Steve Simpson:
You walk into this blind to begin with, thinking‑‑you know, they can tell you what they want, and that’s fine, but everybody reacts different. And I think that’s the big thing everybody needs to understand. From my standpoint, when we got into the chemo, you know, the Velcade and all that stuff, I didn’t have anything really from that I had to worry about other than neuropathy which is‑‑you know, Velcade is a big factor in neuropathy and that being nerve damage doesn’t go away. You can manage it, but it’s going to be with you until, you know, whenever.

So, yeah, I would hope that most everybody is surprised for the most part because you don’t know what to expect. You don’t know what’s coming from any of it. They can talk about the chemo brain, which, I don’t know about the rest of you but when I heard that I kind of laughed. Well, I don’t laugh anymore because it’s sad but it’s there. So from my standpoint, yeah, I think they’re all kind of unexpected. The biggest one probably aside from those was the heart damage that I had that was the beginning of the syncope (? Inaudible) from the start where the left ventricle, the damage down to 35 percent, and so we had to kind of fix that problem first and then go from there, so.

Cindy Chmielewski:
Anybody else? Anybody knew what they were getting into, or was everyone else surprised?

Melissa Vaughn:
Well, I’ve been a therapist for 15 years, an occupational therapist, so I was familiar with multiple myeloma and kind of had a feeling I had it before I was diagnosed it before I was diagnosed. So going into it I kind of knew a little bit about neuropathy and some of the side effects, but just like what was just mentioned that it’s so unique to each patient, and it was very unique to me, my side effects. So like he said, you can imagine, they can tell you what the experience may be but until you do it yourself it’s difficult to predict.

Cindy Chmielewski:
Yeah. I think that’s something we need to stress. Every patient is going to respond to treatment and their myeloma differently, so whatever we’re saying today may help, may not help, may be something you’re experiencing, it may not be, but it’s just good to hear from each other.

We keep on hearing about neuropathy. Has anyone found ways of dealing with or managing their neuropathy?

Steve Simpson:
Well, I’ll be honest with you. With mine, I’m on 2700 milligrams of gabapentin a day, which is about as much as you wanted to take because that’s nine pills a day. Plus I’m on duloxetine, which is an additional drug for that, but in that I had to take away my amitriptyline for sleeping at night because those two contradict each other.

And then we just recently in my last thing, it wasn’t yesterday, it was the last month going in for my monthly we dropped my dexamethasone down because that’s another factor in neuropathy. My hematologist just decided to take the once‑a‑week dex and cut it down and see what that does, and that has helped a little bit. But even that sometimes isn’t enough because my feet are continually numb on the bottom. I refuse to walk around barefoot anywhere in the house. I mean, it’s just‑‑there’s little things that drive you nuts and you can manage to a point, but that’s about as far as it goes.

Cindy Chmielewski:
We talked about some drugs like gabapentin.

Steve Simpson:
Gabapentin, yep.

Cindy Chmielewski:
Who did you work with with those drugs? Was it your oncologist, hematologist?

Steve Simpson:
Yeah, all of this is through my hematologist, correct. Everything I’ve done drug‑wise related to that part of it where it’s related under that section of the cancer is through my hematologist. I have some other things we do obviously through cardiology or pulmonary and those types of things, but that particular one was with the hematologist, correct.

Cindy Chmielewski:
Anybody else have ways that they worked with their neuropathy?

Jill Zitzewitz:
I think for me my neuropathy was much worse before I was diagnosed, and actually it cleared some, which was surprising to me because that was supposed to be a huge side effects of the medications that we take so I was expecting it to just get worse and worse, but that wasn’t a side effect for me. It was more of a myeloma issue, so.

Cindy Chmielewski:
So as your myeloma was getting better your neuropathy was getting low.

Jill Zitzewitz:
Yes.

Cindy Chmielewski:
Anybody else about neuropathy?

Melissa Vaughn:
Exercise, exercise helps me most.

Cindy Chmielewski:
Yeah. I was told a long time ago that maybe a vitamin B‑6 type of supplement may help with neuropathy, so I asked my doctor and he said it couldn’t hurt so I’ve been taking it. I don’t know if it’s helping, but it’s not hurting according to him, so that’s something else maybe that you could consider. Any other body doing anything else there?

Paula Waller:
I take supplements. Actually, I have three things that I do for neuropathy. My neuropathy isn’t terrible, it’s more bothersome, but I do take a B complex vitamin which my doctor recommended soon after I was diagnosed.

I was stunned when my feet went numb within a week of my first Velcade shots, and I began researching, and one of the things I found was people were using acupuncture. And I was skeptical but decided to give it a try, and it has really helped a lot. What I find is I need to keep on a somewhat regular schedule with that. If I go a few months without it then the neuropathy worsens.

The other thing, someone said exercise, and I found that Dana‑Farber’s website has an online health library with a wonderful slide show of very simple exercises that can be done for feet, legs and fingers, and again something that I find I need to keep up with regularly for it to really help, but if I do it does help.

Cindy Chmielewski:
That’s good to know. And talking about acupuncture. Has anyone else used acupuncture or any of the other like mind‑body type of interventions, maybe yoga, meditation, anything like that that may help with certain of your side effects?

Jill Zitzewitz:
I definitely have been doing a lot of mindfulness since then and I think it has helped just with overall anxiety that comes along with disease and everything to kind of keep that under control. So just spending a few moments at the start and end of every day just being mindful and peaceful.

Cindy Chmielewski:
Can you describe a little bit about what a mindfulness practice looks like?

Jill Zitzewitz:
So for me it’s just‑‑really just a centering moment where you just really focus in on, maybe my finger, my knee, maybe the‑‑oftentimes it’s the tree outside my house that I can see in the yard and just kind of really just noticing that. Just noticing the tree or sometimes noticing the birds singing but just letting everything else go away while you focus very much on one particular item.

Cindy Chmielewski:
Okay. I did some mindfulness training at one of our support groups, and it seems like something that would be very beneficial. I really need to try a little bit more of that practice. Maybe that would help a little more.

How about pain? Ways of dealing with whether it’s back pain or any type of bone pain. Anyone have suggestions?

Jill Zitzewitz:
So mindfulness definitely has helped with my pain as well. I seem to be able to kind of forget about it for a bit. Another thing that really for me, I’m in love with my heating pad, so I find for my back at the end of the day I just need to sit on it, so I’ll have the air conditioner blaring so I can actually sit on my heating pad and kind of get some relief that way.

Cindy Chmielewski:
Anybody else have ways of dealing with back pain, bone pain?

Sarah Frisbie:
I’ve had quite a bit of back pain and hip pain. Those are areas. My back I had compression fractures, and so even after they healed it kept hurting. But after I had the fractures they gave me a brace, and I just wear that. If I know I have to sit or walk for a long time I just wear the brace and that helps a lot. Because I try‑‑when I first had the fractures I had to take the hydrocodone, but I try to stay away from that if I can. I don’t like the side effects.

Cindy Chmielewski:
And you said they gave you a brace. Who is “they”?

Sarah Frisbie:
Oh, my gosh, I can’t‑‑it was ordered. I saw like a neurosurgeon.

Cindy Chmielewski:
Okay.

Sarah Frisbie:
And he ordered it, and I can’t remember the name of the company, but like I was fitted for it, and it’s bulky and awkward to wear, but if I’m going to go somewhere and I have to fly and sit upright on a plane or something I will wear that. It’s kind of like an exoskeleton or something. It holds me up and makes it hurt less.

Jill Zitzewitz:
My cane does that for me too. For a while I was barely able to walk and was using a walker and then a cane, and I don’t need it anymore, but if I need to stand for any length of time I am in a lot of pain, and I find if I have the cane I can at least stretch up a little bit and do a little stretching and manage to get through that pain.

Sarah Frisbie:
Yeah.

Cindy Chmielewski:
Anyone else have to deal with some back pain or bone pain?

Steve Simpson:
The back pain came from the surgery, and that’s going to be an ongoing thing for me. I don’t think I’m ever going to get completely away from that. It’s more like, when we’re sitting right here I’ll tell you right now, after so long the position of the neck or the (? Inaudible) support back here because of where the surgery was will create that bit of discomfort or pain.

Now, again, I can’t remember who just said hydrocodone is a big no, and it is. In the beginning when I went through this and put up with it for three and a half months before I even did anything I refused any pain medicine whatsoever, so I’ve got a pile of hydrocodone sitting, hidden away because I won’t take it. What happened was we went to tramadol and a lidocaine patch to just kind of simplify that problem.

Lidocaine patch is nice just because it’s simple to put on, it’s quick, and it does provide enough relief for me to not have to worry about taking anything else. Now, again, it’s more of a‑‑I don’t want to say now a pain as it was initially. It’s more of a discomfort because there are muscles and nerves that didn’t quite heal right, so I’ve got two vertebrae that actually stick out back there where the scar is at, and through all of the weightlifting that I do now on a regular basis that gets pretty tender pretty quick. So I rely on those lidocaine patches and Tylenol every once in a while to get through that.

Sarah Frisbie:
You know, I was going to say another thing that was really effective for me that I use sometimes but it’s kind of awkward to get it in the right place is a TENS unit, the little electrical stimulation. And where it’s at, where the pain is on my back it’s kind of hard to reach, but if I can do it I’ve done that and just worn it all day and periodically turn it on, and that will help me if I have to sit somewhere for a long time. Because the only thing that really, completely relieves it is leading way back in a recliner or just laying down in my bed, but, you know, I can’t do that all day, so.

Cindy Chmielewski:
Right. I find that my pain is worse if I stand in one place for too long, so I try to move positions, not stand in one place. Sometimes just sitting down for five minutes, getting off your feet and restarting whatever you’re doing helps with my back pain.

Lynn Worthen:
You know, you all‑‑I haven’t said anything. I’m listening because, as I said earlier, I haven’t had a lot of issues with side effects. Pain, I don’t have an explanation for this but I don’t‑‑I feel pain like everybody else I guess, but I don’t‑‑I don’t necessarily experience it like everybody else. I haven’t had much pain at all through this. I had, as Melissa said, I have pelvic lesions and a pretty good size one on the left iliac wing. I learned that big term through all this.

And I’ve had‑‑been curious as I’ve travelled and spoken at support groups to ask people how many like bone marrow biopsies they’ve had or fine needle aspirations they’ve had. In Little Rock they do them in abundance, and in eight years I’ve probably had, oh, I don’t know, 30 or 35 bone marrow biopsies and fine needle aspirations. And everything is done‑‑you’re awake. Unless you have to be sedated you’re awake, and so I just lay there, and they do what they have to do. And I feel certain things but I don’t‑‑it doesn’t hurt me that much. I just lay there and do it.

Like right now, see, I wear boots quite a bit, and my right toes on my right foot are a little bit numb, but if I take these boots off and walk around, the exercising part, that little bit of neuropathy will go away. But it is helpful to hear what you’re saying because all that could change. All those things could be different.

And as I talk to people around the country everybody‑‑you said earlier, Cindy, everybody experiences this stuff differently. It’s just there are commonalities in all that we do, but it’s never going to be exactly the same for everybody. It just doesn’t work out that way, and we can encourage one another and help each other with information that we’re gathering in places like this to know what to do when you have certain kind of things happening to you.

So I’m grateful that I don’t feel certain things, I haven’t experienced certain things. And I’ve had lots of Velcade, I’ve had lots of dexamethasone, and I was in remission. And I had a small, truly was a small relapse, and then I had three years of treatment that ended back in May, and through all of those things from the beginning, the stem cell transplants‑‑I had two of them. I had two stem cell transplants in a span of about 10 weeks, and that again is part of their protocol here. And they worked for me and‑‑but I did have a small relapse that put me back, and now I’m in a stringent complete remission situation, which is great.

And I enjoy hearing other people because they help me to understand some of the things that I did experience, and I’m grateful for that. But all those things can change for anybody, and so I thank you for what you’re sharing today.

Cindy Chmielewski:
The one thing about neuropathy I didn’t hear anyone mention was I know sometimes you can dose reduce. You could take maybe a smaller dose. That’s something that you may be able to discuss with your physician if that’s something they’re willing to try. Or sometimes you can take the full dose but spread it out a little bit longer, you know. Instead of twice a week getting a treatment once a week or one every other week.

So I think the important thing is especially with some of these side effects that you experience when you’re taking some of the medications is that open communication with your physician, telling them exactly what is bothering you and how it’s bothering you. Because together you might be able to make some time of decision so that you don’t have to live with the pain, that there might be some way to reduce it or to manage it in the best way possible.

Let’s get into these GI issues and nausea. It sounded like something that people are experiencing. I know the most times I had that was during my stem cell transplant, so why don’t we maybe talk about transplant first and then maybe talking about ongoing and maintenance therapy later on. Ways that you got through your‑‑how many people have had transplant first?

Sarah Frisbie:
Yes, I did.

Cindy Chmielewski:
And Lynne, you had two. Paula, have you had a transplant? Yes. And Jill?

Jill Zitzewitz:
Yes.

Cindy Chmielewski:
And, Steve, did you have a transplant?

Steve Simpson?
(? Inaudible.)

Cindy Chmielewski:
Melissa?

Melissa Vaughn:
I actually‑‑I chose not to do the transplant because I plan on doing IVF, actually‑‑

Cindy Chmielewski:
Okay.

Melissa Vaughn:
So‑‑I plan on having another baby.

Cindy Chmielewski:
That’s important. Actually, that can be something we talk about in a few minutes. Let’s talk about transplant. How did you manage some of those severe side effects that comes with stem cell transplantation?

Steve Simpson:
Some of the what? Could you repeat that?

Cindy Chmielewski:
Some of the severe side effects. You know, I mean, I’m sure you didn’t have any?

Steve Simpson:
You know, that’s kind of weird because transplant, and again, it just goes back to everybody reacts different because this is one of those where you sit in your two‑hour consult meeting and they drill you with everything you’re going to supposedly‑‑you can anticipate, I’ll put it that way. Your time in there, what to expect, this may happen, that may happen.

And I’ll be honest, this is one of the most surreal things I’ve ever seen because the eight or nine hours to take out your own stem cells, that was probably worse than the actual two days of the transplant process because that’s, you know, you’ve got to sit there. You don’t get to go anywhere.

Transplant itself was, I said surreal for me. It was, you know, they come in 24 hours from the time you had the chemo the day before, and had no issues from that. I sat there in total (? Inaudible) for an entire day. They came in and within 12, 15 minutes you’re done. And I looked at my hematologist, I said, really, we’re done? That’s it? He goes, yeah. I said, okay. You know, two and a half, three hours later I’m walking out of the hospital‑‑or out of the cancer center, excuse me, and I never went back until day 98.

So side effect‑wise the worse thing was, what, five days later when your white count goes down to zero and the four buses run you over all at once, you know, you can’t prep for that. So from my standpoint that was probably the worst of it right there, just that normal, okay, you watch your white blood count, have fun now because you’re going to be out of it and go to it. So side effect‑wise I really didn’t have anything.

I was very fortunate through the whole process again, number one, to be able to leave that same day because nothing really changed physically for me at all. I just kind of sat that and I’m like, okay, Dr. Kelly came in I said, okay, can I go home? You know I live 12 minutes, 15 minutes away. I have 24‑hour care if I need it, and everybody in this hospital is what, they’re sick, right? So how about we just go home and we deal with it, and it was fine.

I left, and I felt perfectly fine for the first three or four days like nothing happened, but then once your count drops it’s kind of like, whoa, here we go, but that was about the worst. Other than appetite, but that’s part of the process. So I guess I got lucky from that standpoint. Very lucky.

And that’s where I stress so hard with people that everybody reacts different. Nobody reacts the same, and as we do this and we get on the social media pages of people asking questions they got to understand that everybody is different. And that’s why I like these because you can hear all the different things that go on. Again, I feel very fortunate that I’ve been able to kind of just glide through this whole process with not a lot of issues to deal with, so.

Cindy Chmielewski:
Anyone had like GI issues they had to deal with transplant, fatigue, ways that they (? Inaudible)?

Lynn Worthen:
I learned to pay attention to what the doctors said. They gave me a sheet of paper and they said take these medications in the morning and these in the afternoon and all that, and I looked at it where it said laxatives and stool softeners, and I said I’m not going to become dependent on those things. I’ll make it just fine otherwise. Well, two days later I was asking at 8 p.m. what we could do about the problem I created.

And I learned to pay attention to what they said because I had no background to understand how steroids and chemo‑‑one lady she called it the concrete maker, I mean, how it could really create issues for you. So I learned to pay attention and to know that they’ve been there before and they know a lot more than I do about this sort of thing. And that helped me all the way through.

But, anyway, I just learned to negotiate it by doing exactly what they said about use of laxative, use of stool softener, all that kind of stuff so that you didn’t create a much bigger issue.

Jill Zitzewitz:
I had a lot of problems with nausea, and I found that‑‑I mean, they did give me medication for it, but I really didn’t want to eat anything, and I finally found a couple of foods that appealed to me, canned peaches and yogurt and oatmeal, so that’s all I ate for about 10 days. Literally, that’s all I ate. And then I went through this phase of egg sandwiches when I got home. I just wanted egg sandwiches on toast, you know, fried egg sandwiches. I’m not sure why.

But I didn’t really worry about not getting all of the nutrition I needed just to figure out what I could tolerate, and figuring that out and just going with helped a lot.

And then I also walked every day. When I was in the hospital I forced myself to walk up and down the hallway carrying my IV pole, dancing with my IV. But‑‑and then at home I paced my driveway outside, tried to get a mile in every day, but it would be in like little blocks. Maybe I can do a quarter mile and then after I rested I’d do a little more. And that really helped I think. I got my energy back a lot quicker.

Sarah Frisbie:
I was hoping‑‑I had watched videos and different things of people who had gone through transplants, and I was hoping that I would be one of those people that it wasn’t too big of an issue, so I kind of went into it with a hopeful attitude. But I was really, really sick, and it lasted quite a while. I did it in the‑‑I stayed in the hospital, so I was there maybe I think about two and a half weeks, but it was just‑‑I could barely keep anything down.

But I did eventually‑‑because in order to leave I had to start figuring out how to eat. But I did find some things like you said that I could keep down. And so I developed this love of Wendy’s frosties and I would just eat those. Because I needed calories, you know, and same as you, Jill, I wasn’t worried about nutrition. I just needed to keep something down. So I had frosties for like two weeks I think, pretty much lived on that. But I was‑‑I had so much nausea, and they gave me stuff too for it, but it just seemed like nothing would get rid of it. So that was my experience.

Cindy Chmielewski:
I was more like you, Sarah. I tried to keep on top of it because they told me if I kept on top of it with the medications it was best, but I just couldn’t shake the nausea and the diarrhea every time I ate. And odors were a big thing. There were certain smells that I just couldn’t tolerate just smelling those things. It was strange because some of the things that I’d loved before I had my transplant I couldn’t even stand the odor of.

And you had frosties, I had custard ice cream. That was the thing that got me through, you know, at least being able to eat because I was too in the hospital and they wouldn’t let me out of the hospital until I showed them I was able to eat something. So everyone is so different.

Paula, how was your transplant experience?

Paula Waller:
My transplant was inpatient, and I think nausea was probably the biggest challenge and also mouth sores. Not in my mouth so much but in my throat, and that made eating really difficult. I survived on popsicles for several days.

Cindy Chmielewski:
For mouth sores. Did you do anything else for those mouth sores?

Paula Waller:
The medical team there gave me pain medicine, but basically just had to kind of wait for them to go away. And I did do the ice before the‑and during the melphalan but still got the sores.

Cindy Chmielewski:
Still got the sores even with the ice. For those of you that don’t know, some of the online support communities encourage you to suck on ice and to eat ice the entire time of your melphalan infusion in hopes of not getting the mouth and throat sores. And once again it was something I spoke to my doctor about and he said, can’t hut so if you want to try it give it a try, so, you know, I did. I didn’t get mouth sores, but, Paula, you did, so I guess there is no rhyme or reason for some of the things that we do.

Jill Zitzewitz:
At my hospital they had us eating popsicles because they wanted you swallowing it too to keep your throat cold, and so apparently I almost beat the record. I ate 24 popsicles during that week. But I didn’t have any mouth sores, so it worked for me.

Lynn Worthen:
The nurses told us to eat ice two hours before until two hours afterwards, and being who I am I decided if it worked that way I would just start when I got up in the morning and I would eat it until I went to bed at night, and it worked okay for me. Got water in me and also it kept my mouth and throat cold so I didn’t have problems with it. But I was around people who have had some severe problems like all of you said, and it can’t be a very pleasant experience.

Cindy Chmielewski:
Melissa, would you mind speaking a little bit about your choice of not going for a transplant and why you made that choice?

Melissa Vaughn:
Yeah. So originally when I was first diagnosed we planned to do the transplant and then after four months of treatment my body responded pretty well and then after talking to my oncologist about having another baby because I did‑‑I did IVF prior to treatment because just in case I would need the transplant we decided to do IVF. And after I responded well to treatment I decided‑‑I made the decision with my oncologist to hold off on the transplant so that we could try and have another baby because my IVF was successful, and I knew that it would take a long time for my body to recover after the transplant.

So even if I had just got close to remission the plan was still to hold off on the transplant as of yet. Just because of the current medications that there are I could keep it under control even with steroids. So after seven months of long treatment I did get full remission and so the plan was still to have another baby. Unfortunately, I’ve had some symptoms again, so I don’t know if it was a good decision to hold off on transplant or not, but we’ll see here in the near future, but that was still what I decided to do.

And my hope is still to have another baby. So whether I have to go back on treatment for a little while or if I have to keep it under control with steroids. Of course while I’m still having bone pain and things like that, especially in my pelvis, I don’t know want to have a baby and have a pregnancy with that added pressure on my pelvis. So we’ll just see what the future holds. But that was my decision, that was my reason why (? Inaudible).

Cindy Chmielewski:
And a good reasoning, and best of luck to you. I do know another very young myeloma patient who had one child and now is pregnant with her second child so, you know.

Melissa Vaughn:
I have a three‑year‑old little, boy so I’m hoping to give him a sibling.

Cindy Chmielewski:
Great. Wonderful. Okay. So now that we’re over our little transplant, how about some of the side effects you have (? Inaudible) treatment or maintenance therapy? Someone? Okay.

Off Camera:
One second. Could you just repeat that, Cindy?

Cindy Chmielewski:
Okay. Was that you, Ruthie? No, it was just somebody’s phone went off or whatever, but we can just restate the question and try (? Inaudible).

Cindy Chmielewski:
Okay. Now that we’ve gone over some of the side effects and how to manage them through‑‑let’s try that one more time. See, this is its chemo brain that kicks in. I’m in the middle of a sentence and I forget what I’m saying.

So now that we’ve discussed some of the side effects we were experiencing through our stem cell transplant and how we went ahead and managed them, now that our transplants are over and right now I guess maybe some of us are doing some continuous therapies, some of us are in maintenance therapy. Are your side effects as severe? Are they any less? Any tips, any discussion?

Jill Zitzewitz:
So I am now doing maintenance therapy with Revlimid, and I’m having the same kind of issues with the rashes and my skin is just‑‑I don’t know if it’s partly post transplant as well, your skin is just kind of not the same or if I’m just‑‑that’s where I get lots of problems. So I’m still trying to manage that by modifying the dose. You know, instead of going 21 days and then a week off we’re trying two weeks on, two weeks off. We keep dropping the dose to see, and it’s getting better.

And so I think what you mentioned earlier about working with dosages to try and help, that same thing happened to me during induction therapy with Velcade. I got a terrible rash, went to a dermatologist, and he said, well, I’ll give you an EpiPen just in case, but you need the drug, so. And‑‑but we were able to modify it by modifying my schedule of when I got the dex. I got some of it after my Velcade shot and not all of it before, and doing it once a week instead of twice a week without taking a week off, but there were ways to kind of modify the dosage to deal with the skin issues that I’m having.

Cindy Chmielewski:
Were there any ways you treated the skin issues besides‑‑

Jill Zitzewitz:
Oh, yeah. So there was sort of like a steroid cream on my skin to try to help with that. I found that especially post transplant if my skin gets dry at all or if I get in the sun at all then things get worse, so I’m pretty religious about Eucerin skin calming lotion to keep my skin moist and definitely using steroid creams when things flare up.

And also I’m trying to work on diet to see if that can help, if maybe, you know, maybe I’m already a little bit sort of‑‑my immune system is a little out of whack and I’m taking an immunomodulator which is partly throwing it out of whack a little more. So I’m trying to like limit dairy and gluten and things like that to see if it has an effect, but I don’t know yet.

Cindy Chmielewski:
Okay. Anybody else had to deal with skin issues or rashes?

Steve Simpson:
Kind of an interesting thing because coming out of a transplant obviously you didn’t pick up any Revlimid until after the 100 days or whatever, and I was still back on the original 25 milligrams, and as soon as we started that back up the rash, literally it just took off and it was just‑‑it was brutal. But the oddball thing is we did drop Revlimid down and right now we’re at 10 milligrams, but the steroids I take on Sunday are also for the purpose of keeping that rash down and nothing else. That’s the only reason I went onto that was simple for that purpose, and it’s worked fine since then. We’ve dropped that steroid down to maybe, probably eight milligrams a pop because instead of 20 on any given Sunday I take just eight, and that part helps the neuropathy but it’s also kept the rash down.

Now, could I stop that entirely? I don’t know. I might be able to, but obviously the rash wasn’t as severe as some of the other people have, but that was‑‑that was the hematologist’s decision to try that steroid because at the point nothing else was working anyway, so that was kind of a (? Inaudible) that worked so, but, you know, it’s been fine since, so.

Jill Zitzewitz:
Another thing that I heard at Dana‑Farber and I’ve heard a lot of other people that said this, either Claritin or Zofran or some 24‑hour antihistamine type for allergy medicine, and I’ve been taking Claritin, and that actually seemed to have helped too.

Cindy Chmielewski:
With the rash? Okay.

Paula Waller:
I took Claritin also. I had a rash just a couple of times during induction and either the rash was self-limiting or the Claritin really did help.

Cindy Chmielewski:
Good. How about fatigue? Anybody have ways that they manage fatigue or help (? Inaudible) fatigue?

Steve Simpson:
Kind of a weird one. Everybody again being fatigued comes and goes, and for me I guess it’s more or less how much I’ve done during the day. Again I’m‑‑before this all started I was a hyperfit individual, 52, six days a week in the gym or whatever and, of course you can’t give that up, and that’s been a struggle. I’m finally back in at about that pace. That will fatigue me out. And to be honest with you for me now I haven’t been back to work, started, so we’re going on close to three years now. I’m trying to get back, but I guess the only way I can say this is you learn to listen to your body maybe a little better than you did before. I’m always 110 percent, 110 miles an hour, it’s just how I’m wired, and you can’t do that anymore, so now you start feeling that fatigue point, you almost got to just cave in and take a break.

I’m not a person to take naps in the afternoon unless it’s one of those things where like over the recent past I can’t control it, but just got to learn to listen to yourself. If it’s time to take a break, you take a break. I don’t know what else to say because sleeping on a regular schedule is virtually impossible. It doesn’t happen anymore. I hope someday it does, but even with a CPAP I’m lucky to get five, six hours at best in a given night. And of course steroid days forget it. You’re lucky to get two or three over the course of a couple days.

But for me again it’s just listen to what your body is telling you, and if it’s telling you better slow down, slow down. Because again if you don’t, we all know that that’s going to get you in the end, the stress, the fatigue. There are so many things that we don’t‑‑we didn’t focus on prior, at least I didn’t, they’ve now become a point to where if you don’t you’re going to get sick. And obviously we all know that getting sick is the last thing we want because that just multiplies to something we don’t want to deal with. So it’s just kind of one of those things.

But exercise I think is one of those that for me kind of helps with that because you start pushing yourself, you build the endurance, build that ability to do a few more things or more than you maybe were doing before. It’s the same thing as after transplant, get out and walk, get out and move. I can remember after transplant if I was lucky to get two or three block is in on a walk that was good at the time, but at least it was something. You know, you had to build that stamina, you had to build that part of it back up. It’s a continual process. You’ve got to keep going.

Cindy Chmielewski:
Right. So listening to your body, taking a break when you need to. I think that’s great advice. Building up your stamina with a little bit of exercise at a time. Anybody else, ways of dealing with fatigue?

Melissa Vaughn:
As a therapist for a long time and actually working with patients it was interesting to be a patient myself, an interesting experience. And something that I’d always counsel patients to do was to exercise and to eat right. And before my multiple myeloma, before I was diagnosed that’s what I did, and even back then it had an impact on how my quality of life was. And even as a multiple myeloma patient I realized how important those two things really are even as a patient and how I had to kind of eat my own words and really battle through the fatigue because that was probably one of my number one and most difficult symptoms was fatigue. And so even though I didn’t feel like it many days, just getting up and walking.

And also I’ll put in a plug for physical therapy because that’s the realm I work in, and they work closely with your doctor, and they can devise a treatment plan based on your precautions, contraindications, things like that of that nature where you can exercise safely, and they can develop a treatment plan for you. They can also issue braces and things like that if that’s what you need to exercise. But I truly believe that that can increase your quality of life, those two things. Post transplant, pretransplant, during multiple myeloma.

Cindy Chmielewski:
I agree. Unfortunately, I was not one of those most fit people like Steve was prior to my transplant, prior to my diagnosis, but I now know that whenever I’m starting to battle fatigue or not feeling right I go back and I look at what I was eating, if I’m not doing any exercise, and that usually correlates with it. Even if I just get up and go outside, take a walk, being outside in that fresh air, maybe doing some mindfulness out there, enjoying nature, just trying to get my mind off maybe all those stresses because stress sometimes causes that fatigue too, you know. And eating right, eating food that provides you with energy, you know, I think those two are really good points in dealing with fatigue. Any other?

Jill Zitzewitz:
Related to exercise, so I did do physical therapy before I was diagnosed because of the compression fractures, and that definitely helped with building my core strength, and I kind of kept resorting to those exercises during the transplant process. But I was a little bit nervous about exercising vigorously because I didn’t know how strong my bones were, I was afraid of‑‑and so I actually joined the Livestrong program at the YMCA and I found that to be incredibly‑‑I mean, I’m doing Zumba and things I wouldn’t have done before. A lot more cardio, because you can do it in a modified way. They can work with you, we do it‑‑and I learned how to do yoga, I learned how to trust my body more and take breaks when I need to, not to overdo it, you know, to set my own limits.

So I found that that was really helpful for me. It was also a support. There were other cancer survivors there, and it got me back exercising, and now I’m also back in the lab. I’m a scientist, so I’m on my feet most of the day in the lab, but it actually helps. It doesn’t make me more tired. It helps me to keep moving.

Cindy Chmielewski:
I agree. I was part of the Livestrong at the Y program, and it really did help because you have the one‑on‑one trainer to help modify those exercises just for you. So I felt more comfortable than just joining a gym. And, like Melissa said, I went to physical therapy because I wanted to start exercising but I was afraid because I had so many compression fractures. What I should be doing, you know. I didn’t want to hurt myself anymore. I lost three and a half inches in height throughout this process, you know, and when I went to the physical therapy fortunately we were able to do like aqua therapy in a pool and learning how to do Zumba in the pool and just many resistance exercises, so I didn’t have all that stress on the body.

And from the physical therapy I was able then to join the local pool and take part in some of those classes that weren’t putting the stress on my bones in the very beginning (? Inaudible). I agree physical therapy could really help with getting to exercise, and then once you start exercising you might gain some more energy and the fatigue may go away. Anyone else? Okay.

Let’s talk about online patients communities. Any of you belong to any of the online patient, either Facebook groups, Smart Patients, PatientsLikeMe? Any of those?

Jill Zitzewitz:
So I’ve joined some of the online Facebook groups, but I actually didn’t when I was first diagnosed. I think I was a little overwhelmed and I didn’t necessarily want to hear everybody’s stories, but now that I’m feeling better I feel a little bit more like maybe I can offer some support. So I found them to be very helpful, things that you might not have even thought of, thing that you can bring up to your doctor come up, right, because people have different experiences.

I was kind of afraid to be on the web too much because there’s a lot of things out there that you don’t know how helpful they are and they can be scary. I have four kids, and first thing they did, they’re teenagers, was go on the web and think oh, no, mom’s got three to five years to live. She’s not going to see me graduate. She’s not going to see me, you know, get married or have children, and that’s not necessarily the reality for myeloma patients today, right?

So I think finding good resources and finding support and hearing the stories of survivors who have been, you know, 15, years, 20 years at it, you know. It’s starting to become very encouraging I think for everybody.

Cindy Chmielewski:
Anyone else on any of the online communities?

Sarah Frisbie:
I am on Facebook. I have‑‑and I look at it. I’m just the opposite of you, Jill, because you said like when you were not feeling well you didn’t, you know, you didn’t want to hear like any scary stories, and when I was feeling good I didn’t want to think about it. And then if something would happen or I’d relapse, then that’s when I guess I was wanting to hear what other people did. But I agree it’s very encouraging to hear people who have been successfully either in remission or at a low level for years and years. That’s probably the most encouraging thing, I think.

Melissa Vaughn:
I think I’m the only one on Instagram. There’s not a huge myeloma community there. However I did put myself, I tagged myself as myeloma in there, so I have connected with a lot of people actually a that have‑‑it’s a little more difficult when you’re‑‑I have to say when you’re younger because there’s not a lot of people with young kids with multiple myeloma or want to have another baby? (? Inaudible).

Cindy Chmielewski:
Right.

Melissa Vaughn:
(? Inaudible) connect with other young people and so a lot of people, yeah. That helps to connect (? Inaudible).

Jill Zitzewitz:
There is a Facebook group for myeloma patients who are under 50. They let me join even though I was 53 because I am a working mom with four teenagers, (? Inaudible) relatable. And I found that one to be‑‑

Melissa Vaughn:
Very inspiring.

Cindy Chmielewski:
Yeah. And actually I was talking to someone in that Facebook group and he is in his 20s, so I think he is trying to start a Facebook group for myeloma patients who are maybe under 40, so there might be a totally different perspective even having more children. I’m on Instagram too, so I’m going to have to find you.

Melissa Vaughn:
Yeah, it’s myelomamama. That’s what I call myself.

Cindy Chmielewski:
Oh, I do follow you. I’m myelomateacher on Instagram so I’ll follow myelomamama. Okay

Melissa Vaughn:
(? Inaudible) so I know you.

Cindy Chmielewski:
What? I’m having a hard time hearing you, Melissa.

Melissa Vaughn:
Oh, sorry. I don’t know if my internet connection is kind of going in and out. I just said okay, I do know you. That’s what I said.

Cindy Chmielewski:
Cool. I think I was more like Sarah with online communities. When I first got my diagnosis was 10 years ago. It was prior to most of the Facebook communities there, and Smart Patients was at that time called ACOR, (? Inaudible) cancer online resources, so it was a long time ago, but I knew nothing about myeloma. I was really an uneducated patient. I really didn’t know much about what types of questions I should be asking my doctor or any conversation. So just being part of that community and working and seeing what people were talking about in that community, I would just write down questions that maybe I should be asking my doctor and, you know, or things that other people were doing to see if that was something I should consider doing.

So for me the online communities really helped first educate me as a patient to learn what I should be doing at a patient, how I should be engaging with doctors because prior to that I was brought up in that age of doctor knows best, and I just blindly followed whatever the doctor was telling me, and I soon learned that conversation was something that was important, but then also when different things were coming up I always had my list of questions that I wanted to ask if this was okay for me to do too, so. Anyone else on any of the communities online?

Lynn Worthen:
I’m not on online communities, but I just want to put in a pitch for any kind of communication between patients. That’s particularly what I do when I go and speak to support groups, but I’ve watched the ability and the power of groups to help someone who is really struggling with some of the decisions about treatments and that sort of thing. If they can talk to someone else who has been on that journey already, it can make a lot of difference.

I’m thinking particularly of a group in Boca Raton, Florida, where one man was going to do nothing. He was as low as a snake’s belly in his depression. And I watched that group who knew him talk to him and the lady who led the group texted me a few days later and said he’s decided to go and be evaluated. You know, it was the power of that group to help that person make good decisions about their life. So things like this where people can talk to each other I think are really very, very good.

Cindy Chmielewski:
You bring up a good point. Any type of group, online, in‑person. There’s a number of myeloma support groups across the country that if you’re fortunate enough to be in one of those cities could really help you out. Could pick you up, could provide you with lots of information. So, yes, definitely the power of the groups. Okay.

Any other words of advice, anything else we didn’t talk about you think it’s really important for someone maybe even newly diagnosed with myeloma should know, should think about, should explore?

Steve Simpson:
I’m going to bring this up. The biggest thing that we pushed is that we, my wife and I, have I guess pushed ourselves as advocating for yourself, and I’m going to say that because again being on social pages and reading, there’s a lot of people out there that don’t realize that they can advocate for themselves in more than just your own health. My perspective on this was you went in to a visit, like when I go see a hematologist, if I walk out with a question unanswered that’s my fault. That’s not his, that’s mine.

We have a very busy cancer facility where I’m at, so these guys see a high number of patients every day and they’re busy, but they take the time that they need. My visits can go anywhere from five minutes, 10 minutes to maybe 20 depending on what I have going on. I’m usually the short version of a visit. They like that. I’m in and I’m out, everybody’s happy. But you have to advocate for yourself.

And the biggest thing that came about for this with us is when it came time for the stem cell transplant the insurance that we had at the time told us that you are not going to have it here at Avera in Sioux Falls because they were now what they call a center of excellence, which is a piece of paper. I could go to Omaha, I could go to Mayo, I could go to the U of M. I said no, no, and no. Now, the lady who was dealing with this was in Florida, so she had no idea not only where I was at but didn’t even know really what was around there.

So on call number one we got a little vocal with her and said okay, take your hands off the key board, listen very carefully. I’m going to tell you where I’m at. I’m going to tell you my four options, and then as we went on it went down to where they’d only cover certain percentage of the transplant, then all of a sudden I was told if I was going to stay here they wouldn’t cover any of it. And I said, well, guess what we’re going to do. We’re going to stay here.

So we spent two and a half months between myself, my advocates in my cancer center and my hematologist dealing with these people at the insurance company saying, look, there’s a reason we’re doing here and here are the reasons. And after two and a half months and delaying the transplant I think two weeks I stayed here. I didn’t have to go anywhere.

Now, you get into this issue of money and all these things with insurance obviously that comes with all of this, but in the long run I didn’t stay in the hospital. I went home, so I look at it as I just saved you guys some money because I was in there for the day and a half and out of door and gone. So had I been somewhere else I would have had to stay there, and that wasn’t going to happen. I had parents who at the time were 81. They can’t travel. We have kids. My wife has to work. She can’t travel. So you lose your support group.

You now go to a different doctor who doesn’t know you. He doesn’t know you from myself knowing any one of you guys stepping up saying hi, how are you other than having pieces of paper in front of you, so you’re basically starting over. I told him I would not do that. I did not just spend all these months going back and forth every day to have you tell me I have to start over just for this process. I said that’s not going to happen.

So that advocating for yourself becomes a really big part of this process. And there are a lot of people who I don’t think understand that, that you can do this. And there’s nothing wrong with doing it. Don’t stand there and let them say you have to do it this way because you don’t. Push yourself and push them to realize that this is about you. This is your life, this is your future, this is your family’s future, and anybody else you have as caretakers, caregivers, whatever you want to call them, this is what you guys have to deal with. So we pushed and we pushed hard, and we’ve always done that and we will continue to do that. And you know, that was‑‑that was stressful when you get to that point. It’s not any fun doing it, but you have to do it. That’s just the bottom line.

Cindy Chmielewski:
Have to learn how to become your own best advocate. Some of us know how to do it in the beginning and some of us need to learn, but you do need to be your own best advocate.

Steve Simpson:
Right. And we’re fortunate because we have advocates for about everything in our (? camp). We have advocates for the insurance. We have advocates for the LLS and all of these little things you can get. We have people that do all that for us, but you still have to be there for yourself and you still have to voice yourself and just voice your opinion and not be afraid to do that because nobody’s going to yell at you for it, but you’ve got to be able to do that.

Cindy Chmielewski:
Exactly. That was one thing I learned, that no one will yell at me for saying my opinion. That was what was I was afraid of, that if I disagreed with someone they won’t like me or they won’t take care of me the way I should be taken care of, and I learned that that was wrong, that I needed to advocate for myself. And people actually respected me when I started advocating for myself and kept becoming that empowered patient. So that was a long way for me, but I agree. You do need to do that day in and day out.

So final words of wisdom. Everyone think of something final to say and words of wisdom to the people who are going to be watching this video.

Lynn Worthen:
None of us picked having myeloma. We didn’t choose that, but we can choose how he handle it mentally, our attitude about it, all those kind of things. And it is very, very important to have as positive an attitude every day as do. Sometimes it’s hard because this stuff can drag up into a dark hole, but whatever it takes to keep your spirits up and to be positive about things will help a great deal even in the treatment process.

Cindy Chmielewski:
Good.

Sarah Frisbie:
I think, and someone mentioned this or maybe more than one person mentioned this before, but the idea that if you are having severe side effects or even just moderate ones talking to your doctor about maybe tweaking like how much or often the scheduling of your medicine because that’s helped me too in the past.

Cindy Chmielewski:
Anyone else have some final words?

Jill Zitzewitz:
I would just say find your community. Don’t try to walk this journey alone. For me I think that was a huge part of it. It was hard to say yes to the meals that people wanted to provide or to help with the kids, but be willing to accept people’s help and don’t try to walk it alone and just rely on people around you to help care for you when you need that.

Cindy Chmielewski:
Paula?

Paula Waller:
I agree completely about maintaining a positive attitude and outlook, but I would say see a specialist. I think every myeloma patient should see a myeloma specialist. Advances are being made so quickly that I think that’s the best way to keep up with it and to make sure that you get the best treatment.

Cindy Chmielewski:
And Paula, just a follow‑up question, for someone who might not know what a myeloma specialist is, what do you look into to make sure that the person you’re seeing is a myeloma specialist?

Paula Waller:
A myeloma specialist who would be a physician who treats just strictly myeloma patients or myeloma patients and other patients with very closely related blood cancers.

Cindy Chmielewski:
Okay. Good. Melissa, do you have any final words?

Melissa Vaughn:
Well, I concur with everybody what they’ve said. I would just say just don’t give up. Like it’s going to be okay. Like multiple myeloma, even though I’m young, it was not the end of the world. I still have a long life ahead of me, and there’s a lot of treatments on the horizon. There’s a lot of information out there, and you’ll grow into it. It was a little overwhelming at first and that can’t be helped. You’re going to feel those feelings of sadness, and it’s a grieving process, but you’ll be okay.

Cindy Chmielewski:
Good. Steven.

Steve Simpson:
I’m going to go back to what Lynn said, nobody asked for this, you know we didn’t, and it doesn’t do any good I guess to sit and wonder what caused it either because I know if anybody’s on those pages you get all those conversations, well, I did this, does this cause it? No, not necessarily, it happens and that’s just part of life. Now, from my standpoint my whole goal from the beginning was to get to a point where you wouldn’t know you had anything at all, you weren’t sick. It’s a struggle in the beginning. It was for me because I had lost so much weight and I came out basically skin and bones from the surgery and everything else.

It was a long haul after that surgery because after you have, you know, that nice 10‑inch opening down your back and you’ve got 45 grand of hardware in your back, I spent probably two‑plus months where I couldn’t even take care of myself. It was complete 24‑hour care with everybody else because if I tried to stand up and walk the left side was completely paralyzed so I couldn’t even hardly do anything. That was from the nerve damage, and when they rip it open to repair all those‑‑the pins, the screws, the rods, all that stuff causes wear and tear on the body. But from my standpoint it was okay.

As I told Kelly, your job is to do this, my job going to be to do this, and you do yours and I’ll do mine. And that’s kind of where I took it. I said, you know, I’ll do what you guys tell me to do knowing that we’re going to talk about medications and stuff like that, but I’m going to do everything in my power to get myself back to where I need to be to where things are basically more normal wherever that new normal might be. And that was just my push was that attitude where, okay, I’m going to go back to where I was or as close as I can get to where it was. And it if it takes an extended period of time, which it does, so be it, but you just have to keep yourself moving.

You know, I agree that the negative attitude doesn’t really‑‑doesn’t do anybody any good in regular life let alone now when you got all these things going on because again you never know what’s going to show up the next day. That’s the joy of this, I guess. We can all be sitting here happy today and tomorrow three of us may be out cold because we can’t stay awake. We don’t know.

It’s just an unknown, so you learn to take things in stride. I learn to take side effects to where unless it’s at a point where I just don’t like it or I can’t handle it I don’t even bring it up half the time anymore, and they know that. If we don’t bring it up in a conversation in a visit we’re not going to deal with it. Only going to deal with it once I ask for it because I try to manage a lot of that on my own. I don’t know about the rest of you but I was‑‑growing up out here in the Midwest in this lovely great white north as I call it you learn to have your body take care of a lot of the issues on your own. If you got sick, your body took care of it for you. I was fortunate as a kid if you got sick or you didn’t get sick your body was able to take care of it. Well, guess what, that doesn’t happen anymore. But you still try to find that diet or that exercise, all those things that aid in that part of it.

But it’s just that attitude you take coming in and try to keep it going forward. And a big part of that is the support groups we have, you know, the families or people you can talk to. All those things kind of come into play, so.

Cindy Chmielewski:
Thank you. And I guess my final words of wisdom being a former fifth‑grade teacher and myelomateacher on the internet I think it’s so important to educate yourself, you know. I believe knowledge is power, and if you’re an empowered patient having discussions with your doctors and with your care team no matter what, I think you’re going to have the best possible outcomes for your situations. So educate yourself and find support, and just like Steve was saying make sure your voice is heard.

I want to thank you all for spending time today, sharing your knowledge with us and hopefully inspiring some others.

Please remember the opinions expressed on Patient Empowerment Network are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Exercise and Nutrition Before and After Myeloma Treatment: What You Should Know

Living Well with Multiple Myeloma

Exercise and Nutrition Before and After Myeloma Treatment: What You Should Know from Patient Empowerment Network on Vimeo.

Downloadable Program Guide

Exercise and nutrition are important components to long-term health for everyone. But as a myeloma patient, are there specific tips for exercising safely? Can incorporating simple lifestyle changes improve and maintain good bone health? This webinar, featuring physical therapist Melanie House and dietitian Alexa Welch, both from University of Iowa Hospitals and Clinics, will provide guidance for individuals looking to increase their overall health through diet and exercise.


Transcript:

Andrew Schorr:
Greetings. I’m Andrew Schorr coming to you from Quebec City, Canada. I’m delighted to be here, and hopefully some of our Canadian friends are on with us. We’re going it go around the US as well with some leading experts in this important Patient Empowerment Network program produced by Patient Power. And the program is Exercise and Nutrition Before and After Myeloma Treatment, What You Should Know.

And we have some very knowledgeable experts who will fill you in, so take notes, with stuff you can discuss with your caregiver if you’re a patient, with your family members and for you to know so you do as well as you can living with myeloma whether you are going through treatment like transplant or on multiple drugs. Okay.

Lots to talk about, and we have received many of your questions already, but if you have a question send it in to myeloma@patientpower.info, myeloma@patientpower.info. I want to thank the companies that have provided financial support for this program. We’re very grateful to them. They have no editorial control, but they want to support the myeloma community. Those sponsors are AbbVie Incorporated and Celgene Corporation and Takeda Oncology. So thanks to them. All right. Ready to get started?

Let’s go first to Cleveland, Ohio, where he is joining us by phone, and that is my friend Jim Bond. Welcome back to our program. Thank you for being with us, Jim.

Jim Bond:
Oh, you’re welcome. Thank you for having me. It’s good to be here.

Andrew Schorr:
So, Jim, you were diagnosed with multiple myeloma. What is it, like 26 years ago?

Jim Bond:
Yes, in 1992.

Andrew Schorr:
Okay. You’ve had a variety of treatments and clinical trials, and you’ve had transplant, and then you also developed a second very serious cancer, AML, so you’ve had altogether I think four transplants. Is that right?

Jim Bond:
That’s right.

Andrew Schorr:
Whoa. Okay. Now, we should mention that in a couple of days, Jim, you are going to once again be on your bicycle four days riding 328 miles. What is that ride that you’re doing now for I think the 12th time?

Jim Bond:
It is the 12th time, and it’s the American Cancer Society Pan Ohio Hope Ride, which my wife Kathleen founded and leads. She got me to ride, and I’ve been able to do it 11 straight years and I’m done training. I trained an hour this morning and I’m ready to go, so in two days we start from Cincinnati and four days later 350 of us will arrive in Cleveland, Ohio.

Andrew Schorr:
Okay. Well, we’re all riding with you, Jim. Exercise and physical fitness has played a big role for you, and we’re going to come back to that in a minute, and you’re going to tell your story how your commitment to exercise has really helped you survive myeloma and also get the treatment you needed for acute myeloid leukemia, they call it. So we’ll be back to you, but I want to introduce our other experts.

So let’s go to our experts, medical experts who are in Iowa City, Iowa, at the University of Iowa Hospitals first bringing back to one of our programs oncology physical therapist, a veteran in the field, Melanie House. Melanie, welcome to our program today.

Melanie House:
Thank you, Andrew. It’s great to be here.

Andrew Schorr:
Okay. Thank you. And, Melanie, just to understand, you’ve been working with oncology patients including on the transplant unit there for about how many years?

Melanie House:
Well, oncology patients actually for most of my career. Probably in the early 90s I started working on some of the oncology floors, but I’ve been specific been overseeing the bone marrow transplant unit since January of 2010.

Andrew Schorr:
Okay. And they have some myeloma patients who come through there, right, who have transplant?

Melanie House:
Yes. Actually, that’s a significant part of our population, is the folks with multiple myeloma.

Andrew Schorr:
Okay. We have a lot to talk about. Okay. But you have a colleague I’d like to introduce who is a dietician with oncology patients and also works on the same floor as there with people who are going through a lot including transplant. So Alexa Welsh, thank you for being with us also from the University of Iowa Hospitals.

Alexa Welch
Glad to be here today.

Andrew Schorr:
How long have you been in the dietician field?

Alexa Welch
I have worked as a the dietician for three years, and then I have worked on the same floor as Melanie with the bone marrow transplant patients now for two years.

Andrew Schorr:
Okay. Wow. All right. So let’s start with exercise, Melanie. So, you know, I’ve interviewed a number of myeloma patients over the years, and there are some people who find out they have myeloma when a family member gives them a hug and then they have like cracked ribs, and they never knew that they had this illness they never heard of. They never knew that their bones were at risk, and then they go in and they get this diagnosis. And it’s terrifying. So you think, well, gee, if somebody giving me a hug can crack my ribs and I have myeloma how on earth can I exercise? What do you tell people related to these bone issues?

Melanie House:
Well, I always take time to educate my patients on where their lytic lesions or pathologic fractures may be located. In my experience that’s actually an area where patients often don’t realize, perhaps they’ve never viewed their imaging. And I encourage my patients to better understand that because if you don’t realize where those lesions are then you wouldn’t have good information to guide other activities or precautions that you might need to take.

Andrew Schorr:
Okay. So at step one, know where you have lesions. Step two‑‑but that would freak me out. I’m a leukemia survivor myself and I haven’t had those bone complications, but if I did I would be just terrified to do stuff. But yet, exercise is good for us, right?

Melanie House:
Well, I think‑‑yes. Exercise is good for you as long as it’s in the proper dose, right? And so it needs to be the right intensity, the right frequency, the right load. And so that’s where you really need to work with a professional who has good understanding of where your lesions are and understands the different biomechanical principles. You know, how the muscles might pull on that bone, that could be good or bad. How posture or lifting technique might impact your fracture risk.

So it’s important that there is a professional who’s knowledgeable working with you, a physical therapist that has access to those films or those scans to help inform them giving you the proper prescription for exercise.

Andrew Schorr:
A couple more questions for you now. So some of us know my friends Jack Aiello, who was treated with transplant years ago. He’s doing great. Also like you, Jim, a long‑term survivor of myeloma, but he was left with neuropathy, so he walks with a cane, sometimes he uses a scooter. But yet, you know, he’s aging like all of us and he needs exercise for his body. So what about if you have that complication of neuropathy, which some people do with myeloma?

Melanie House:
As far as exercise, we can find some form of exercise that’s safe anywhere along that spectrum. That all depends on the person’s balance response, their tolerance for weight bearing through their legs because some people have not only those sensory changes but they have more painful kinds of sensory changes with weight bearing.

So, again, it’s very specific to the patient, but the one thing I do want to emphasize about neuropathy is it is not a‑‑I have a lot of patients who say to me, well, I know my balance is bad because I have neuropathy, end of story. And I say to them, well, actually, you know, we have the potential to improve your balance because fortunately your brain is still connected to your muscles through your nerves, and we can recruit other muscles and help them work more efficiently together to improve your balance response.

And so I actually train my patients with neuropathy so that they can improve their balance and have heard countless reports back from patients who were discharged from the hospital and gone on to do outpatient therapy and recovered balance that they never thought they could.

Andrew Schorr:
Wow. How do you do that? Is it like practicing standing on one foot, or give us a clue?

Melanie House:
Well, that is actually‑‑I’m a very practical person, and I work with people that are laborers. You might work with a truck driver or somebody who is a farmer, and these aren’t individuals that are typically going to see (?) a gal at tai chi or something like that, and it is that simple. But if you can challenge yourself in single‑limb balance and do it safely that is really going to force your nervous system to have to respond more quickly and efficiently.

That is actually the test that I do and the exercise that I prescribe, but I set them up to do it safely. So if you can do this test and this exercise standing in a corner in your home where two pieces of dry wall come together with a chair in front of you then you’ve got the walls that can catch you behind and to the sides with the chair in front of you so that you can catch your balance if you need to and when you need to.

Yes, single‑limb balance is a great way to challenge ourselves. And you might get the feedback, well, I never stand on one leg, and to that I say, actually when we walk we’re standing on one leg over and over. So it does prepare a person to be better on uneven surfaces, slopes and conditions like that.

Andrew Schorr:
Okay. And we were talking about bone complications, and obviously if you’re worried about these lesions and you fall, which you might if you don’t have the best balance‑‑

Melanie House:
Right.

Andrew Schorr:
‑‑and that triggers more bone issues.

Melanie House:
Correct.

Andrew Schorr:
So we don’t want to really understate balance is important, and many of us and the people typically, not always, with myeloma are older, where balance isn’t as good anyway. So balance, we got to think about balance, right?

Melanie House:
Very important. Very important.

Andrew Schorr:
Okay. All right. Let’s talk a little bit about nutrition, Alexa, for a minute. So there you are in the transplant unit, and Melanie was mentioning a number of patients who come through are people being treated for myeloma. When you get blasted or even with less intensive transplant there are a lot of issues about feeling like you can eat. Maybe you have mouth issues, pain, etc.

So first let’s talk about somebody getting ready for transplant because that’s still used in myeloma in some quarters. How can somebody fortify themselves if they’re told, well, transplant is what we’re recommending for you?

Alexa Welch
So one of the most important things we want patients to be aware of before transplant is maintaining your weight. Try not to lose any weight. We don’t want you losing muscle or losing strength at all before transplant. So eating a well‑balanced diet while you can, while your appetite is still good. Eat from all the food groups. Get your fruits and veggies in. Get your proteins in. Keep your muscles strong. Keep your weight up. That’s pretty much the coming into transplant being prepped and as strong as possible.

Andrew Schorr:
Okay. But you’re sick going into transplant, so is this like I don’t want to say force feeding, but mean if there’s a care partner there, are they saying, George, eat your vegetables. You’re 72 years old. I mean what‑‑is it‑‑you have to make an effort I guess.

Alexa Welch
Yes, so actually most of the time when I see patients present on day one of hospital admission they are usually feeling pretty well and have been eating well at home and actually have not been losing weight usually. So sometimes when they’re first diagnosed they’ve lost some weight. They weren’t eating well. They were tired, they didn’t know why. That is usually behind them before they come in for transplant.

So typically actually when they get here they are feeling pretty good and have been eating pretty well. It’s going into their admission where they’re getting the chemo and they’re getting transplant that they start to not feel very well again.

Andrew Schorr:
Okay. Let’s talk about that. So people‑‑and of course we have groups in myeloma going through different kinds of treatment. Let’s talk about transplant for a second. If they’re on your unit how do you help them with their diet when, let’s face it, this is rough business. And Jim’s been through it four times. We’ll talk to him about it. But from your point of view how do you help people stay strong?

Alexa Welch
Yes, nutrition is very individualized just like Melanie was saying can for exercise. You just kind of have to figure out where the patient is and what they’re struggling with most. Some of the most common side effects are going to be loss of appetite, mouth sores, nausea, vomiting. We kind of take each of those individually.

So loss of appetite, typically we recommend doing smaller meals more often throughout the day instead of forcing yourself to eat three big meals. When you don’t have an appetite and you’re not hungry and you’re forcing food down sometimes it’s easier to force a smaller amount and try that every couple hours instead of sitting down to a big, overwhelming meal that you can barely even get three bites down and then you just feel hopeless because there’s no way you can finish all that food at once.

So sometimes just having snacks like peanut butter and crackers or fruit and cottage cheese or something small like that and breaking that up throughout the day helps get in enough calories and protein so that you’re not losing weight or losing strength. So usually that is what we do for loss of appetite when you are kind of force feeding. And then when you get to that point we’re not really super worried about eating from all the food groups, so if you’re not able to get your fruits or your veggies in for those few days I’m not going to be super concerned. Or a milkshake is the only thing that sounds good, then absolutely we want you getting your calories and getting your protein that way.

Andrew Schorr:
I’m glad to hear you say that because my‑‑my little kid when I went through chemo would bring me a great chocolate milkshake and I didn’t feel guilty at all. So that’s okay. You’re giving us permission.

Alexa Welch
Absolutely, yes. Absolutely. And I think most of my doctors and team agree with that, that if that’s the only thing that they can get down, then we’re definitely not telling them that they cannot have that.

For nausea and vomiting, usually our pharmacists and our doctors have medications that they can get on board to help, antinausea, antivomiting medications that help control that. And then from my end I just make sure my patients know that right after they get a dose of that medication is when they should try to order some food or eat some food so that that’s fully kicked in and they can try to get as much food down and keep it down as possible. Obviously, if you’re force feeding yourself and it’s going to come back up, it doesn’t do any good. So medication does usually help control the nausea. We’ve just got to make sure that we find the right cocktail for them.

Andrew Schorr:
All right. Post‑transplant, and this may be for people who are on these two‑, three‑, four‑drug combinations now for myeloma, what are you recommending now for a healthy diet? We’re doing some recipes on our website and people say try this, try that, but what are you recommending so that people can regain their strength or be as strong as they can because they’re probably getting some ongoing medicine?

Alexa Welch
Yeah, so appetite usually is kind of slow to come back after transplant. I do hear from my patients who have left and then either come back for a second transplant or hear from our outpatient dietician that works with them that going home just helps your appetite too. Being able to eat your own food in your own home helps a lot. Usually as soon as appetite comes back patients are able to kind of eat, you know, back to normal, back to three meals a day instead of snacking throughout the day.

Recovering, honestly, is still just adequate calories, adequate protein so that they’re still not losing weight. I still never encourage weight loss even after transplant is done because that can be muscle loss and can affect your strength overall. We want you to not be losing weight after transplant as well. And then in general I do a food safety education with patients before they leave the hospital, so making sure‑‑you know, because after transplant your immune system is still not perfect, and we want to make sure that we are eliminating as much bacteria from the food you’re eating so that doesn’t cause any issues, you don’t get any food‑borne illnesses. So we go over that kind of stuff.

Besides the food safety and then adequate calories, adequate protein, you know, weighing themselves, making sure they’re not losing weight. That’s pretty much it. We just want you to stay strong and make sure you’re eating well. And then once you are feeling a little bit better focusing again back on that balanced nutrition, so eating from all the food groups and getting your fruits and veggies in and all that.

Andrew Schorr:
One last question for you now. So there are these products you can get at the supermarket, you know I don’t know the different brands, Ensure and I’m sure there are other brands, high calorie. Do you recommend that to people if they’re not eating a plateful of food?

Alexa Welsh:
Yes, absolutely, especially when they’re in the hospital and their appetites are bad and they’re not eating very much food or they can’t force down solids sometimes liquids do go down better. We use Ensure here. That’s just who our contract is through, but Boost is an equivalent. Equate, or the Walmart brand make their own. That’s an equivalent. I think Costco and Sam’s will have their own.

They all essentially serve the same purpose, which is higher calorie, higher protein in a smaller amount and so that you’re not again having to force feed yourself all day long when you don’t feel well. I would say those are indicated again when your appetite is not very good or you’re having issuing with nausea and vomiting and maybe that’s the only thing that stays down. But once your appetite is back and you’re eating better those aren’t really necessary as soon as you’re able to maintain your weight on just food.

Andrew Schorr:
Okay. We have a lot more to talk about about food and exercise, but Jim’s lived this. So, Jim, you’ve been through transplant. You’ve been 26 some‑odd years. You’re riding a bike, but you’ve been in and out of hospitals and you’ve had your highs and lows. First of all about exercise. Jim Bond, what would you say to people about the benefit of exercise when you have this diagnosis?

Jim Bond:
I’d say it’s one of the key reasons that I’m alive today. And, Alexa, I agree with everything you said, and I’d just like to add a couple personal notes on my diet. I have gone through four stem cell transplants, and what I made myself do is get out of bed, starting with the first one, and it was hard because I was knocked down with the drugs they gave me. But I found that by getting out of bed and then when I was able take a few steps, and then walking around the floor pulling my IV behind me, it gave me‑‑it gave me‑‑it would tire me out, keep me from sleeping in the afternoon, and it actually helped stimulate my appetite. So I would recommend that you try that as much as you can.

If you can’t get out of bed yet just make yourself‑‑I made myself sit up in the bed as long as I could, and that sounds trivial but at times it was not trivial. And, Alexa, my wife, Kathleen, who is my caregiver, she found a high‑calorie, high‑protein drink that she brought in, and I found different flavors work for me. Orange was my favorite. But that was‑‑to me is what was key.

I found what appealed to me food‑wise, and I just ate as much of that as I could. I didn’t worry too much about three food groups. I was too sick. But when I found something that worked for me I would do it. I would also order all three of my meals when I woke up in the morning, and when they arrived that gave me the motivation to, okay, try something. If I put off ordering, then I might not even have the desire to order. So that was a little bit helpful for me.

But exercise has been key throughout my battle with cancers. In fact, exercise saved my life, as you referred earlier. I was‑‑I was 64 years old. I had lived with myeloma successfully for I don’t know many years, and then I got leukemia. And it was the kind of leukemia that’s treatment related and they said, hey, Jim, the only way you can live is by getting yet another transplant.

So they threw me in the hospital for what turned out to be three months solid. They got my leukemia down. They found a match on the matching database, and they came in my room, and I was thrilled. I said, great. When do I get the stem cells? And they said, well, we’re not sure you can live through another transplant, and I said, but that’s the only way I can live. And they said, but we can’t kill you.

So I pleaded my case. They came back and they said, Jim, the doctors who were voting against you on our committee, they changed their mind and voted yes when they heard that two months ago you cycled 328 miles, four days in the American Cancer Society Pan Ohio Hope Ride a month ago. So the exercise of not only training and riding in the bike but just every day doing something, that saved my life because they were not going to give me that‑‑turned out to be a German woman’s stem cells. They said I was not a good risk until they heard what exercise did for me.

And that’s really been true all through this thing. By exercising, doing something every day, I think it made my body able to take more and more treatments because, as we know, today myeloma is still not curable so when it comes back I want to be as strong as I can to make myself tolerate another one. Now, each day what I think of as my mantra is to be on my feet not on my seat. And right now I’m standing up talking to you because I think even standing is better than sitting. And Melanie’s great guidance at a seminar we were at helped me understand that walking is really good for us and standing is better than sitting. Sometimes it’s hard, but I make myself do that.

Andrew Schorr:
Right. Oh, boy, what a great story. And now let’s go to the guru here, Melanie. So, Melanie, I got as a Father’s Day gift a Fitbit. Somebody may get a bigger one, a smaller one, an Apple watch or just count their steps somehow. So today Esther and I are in Quebec City, where we are partly on vacation. We did 11,000 steps. And I’m a two‑time cancer survivor, chronic lymphocytic leukemia and myelofibrosis.

So, Melanie, just walking, is that good? I mean, I didn’t jog and I didn’t lift weights today, but I walked.

Melanie House:
So that is a huge accomplishment, especially when you think about what you achieved by walking. Something that people don’t realize is that‑‑earlier you mentioned the importance of load bearing to the bones in order to stimulate bone density. Well, people don’t realize that when we’re walking because of our body weight and the influence of gravity when your foot hits the ground your bones actually experience about one and a half times your body weight. So you are actually doing an appropriate dose of loading in those long bones in your legs, for example. So you’ve gotten some weight bearing in. You’ve gotten some endurance exercise in. Helps to build your cardiovascular system.

And the other thing is that walking I do want to mention because a lot of my patients, they’re very fixated on walking and I applaud them, but if we are trying to prepare people to be able to do other things like climb their stairs, then we do have to add a different type of exercise to prepare them for that.

Andrew Schorr:
Okay. What’s that? So how do I‑‑or our friend Cindy (?) Chimileski and some of the other myeloma patients have even done these mountain climbs, which have been incredible. But how do you prepare for climbing? Steps or mountain?

Melanie House:
So as it turns out, you practice for the test for most things. So if what you need to be able to do is climb stairs we need to either be climbing stairs while you are in the hospital, or in our case because we know that our patients are prone to getting low blood pressures while they’re here, it’s usually I think a side effect of the chemotherapy, then we have gone to what what’s called the NuStep. That’s the name of an exercise machine that is basically a seated stepper. So that is one way that we’re able to get people working on their stair climbing muscles in a safe with way while they’re hospitalized.

But even an exercise like bridging that’s something that can be done lying in the bed. For my patients that can’t get in the hallway we’re doing a bridging exercise which is working all of the same muscles at zero percent risk of falling down because they’re already laying in bed.

And some people like to do squat exercises which can be done and should be done over a chair or over the bed. But the one precaution there if you are dealing with fluctuations in blood pressure is if you’re doing that sit‑to‑stand motion repeatedly that could bring on that sense of light‑headedness or weakness because of the drop in blood pressure.

Andrew Schorr:
We talked about bone complications, and we were talking about people going through transplant, different medicines. So we have highs and lows with any of these blood cancers. So you and I were talking before the program and you were talking about people being aware of their numbers, their blood test numbers.

Melanie House:
Right.

Andrew Schorr:
So talk about that a little bit as to us having a clear idea of where we are, not just do we have a lesion in a bone somewhere but about our blood.

Melanie House:
So the most common complaint that I hear people say is I’m just so tired, or I get short of breath when I’m doing stairs or walking, and I think there were each some participants today that sent in some questions asking about what can I do to address my shortness of breath. And the first thing that I think about as a clinician is where are your numbers at for your hemoglobin or your red blood cell count, because our red blood cells, they are the vehicles that actually deliver oxygen to our muscles and to our brain.

And one of the most important muscles that must get oxygen is actually your heart, and so it is important to recognize whether you’re anemic. If you’re anemic I can tell you right now there is not a single reference that I could find that would support you or support me prescribing you vigorous aerobic exercise because anemia means you’re at about half of your normal amount of red blood cells yet you’re trying to do vigorous exercise. The muscles that are doing the work are going to aggressively be pulling those oxygen molecules off of the red blood cells, but you only have half the number of red blood cells that you should have to deliver oxygen.

So it doesn’t matter if your oxygen saturation probe says you’re 100 saturated. That just means that those half of your red blood cells that you have happen to be fully loaded, but there’s not enough of them to safely do vigorous aerobic exercise, and your heart could suffer the consequences. I’ve had patients who actually did induce a heart attack just from walking at a time when their hemoglobin was very low and when their blood pressure was low.

Andrew Schorr:
Okay. So let’s go over a couple things we talked about with you. One is related to bone complications, understand where you have bones that are at risk.

Melanie House:
Correct.

Andrew Schorr:
Right? Okay. That’s the first thing. And hopefully there are bone‑‑there are medications now that some people have discussed with their doctor that can try to slow the progression of those bone complications. Okay. So that’s part one. Part two is you talked about balance. That’s so important. Even if you have neuropathy don’t be freaked out that you can’t develop balance. And then related to knowing your blood counts so that what you’re pushing your body to do is healthy.

Melanie House:
Correct. Right.

Andrew Schorr:
Okay. All right. Got it. We’re going to come back for some more. I want to get some specific exercises. So walking is good. Climbing, if you have stairs in your house, those kinds of things, or if you’re training for one of these myeloma challenge trips, whatever it is, we’ll talk about that more in a minute.

Alexa, so we talked‑‑you keep saying, you know, fruits and vegetables and balanced diet and all that, but patients we have are friends in the myeloma community say, well I’m going to do this special diet in their effort to take back to control where cancer has kind of tried to take control away from them. So how do you feel about special diets, whether it’s meat, vegan, you know? How do you feel about that?

Alexa Welch
So some of those diets just end up being overly restrictive or totally cut out certain food groups, which is not‑‑I mean, there is just not enough evidence out there to support any of those restrictive diets actually really helping. Cutting out food groups like that sometimes results in weight loss, which, as I have mentioned a few times before, that’s definitely not the goal. We don’t want you losing weight. Don’t want you losing muscle.

And a lot of times when you’re sick and you have cancer and you’re going through treatment, any time you’re losing weight unfortunately it’s muscle loss. It’s not fat loss. And so then again that results in weakness and poor outcomes as far as response to treatment and recovery. So, yeah, some of those special diets, I mean, I would have to take it patient by patient if they feel very strongly about it, but, yeah, a lot of times they’re just really restrictive on certain food groups that they can’t have or should cut out totally. So I don’t usually recommend those.

Andrew Schorr:
Okay. So a couple of questions. Maybe these are myths or not. So some people have wondered, does sugar intake feed the cancer cells?

Alexa Welch
So a lot of the foods that we eat, all carbohydrate food, so whether it’s fruit, grains, rice, milk has carbohydrates in it, any carbohydrate that we take in will break down to a molecule called glucose, which are‑‑all of our cells in our body need glucose to function properly. It’s the energy that they use. So whether those carbohydrates are coming from sugar, artificial sugars or added sugars or natural sugars from fruits, they all break down to glucose.

We cannot control which cells get the glucose that we take in. Once we eat it, our body does with it what it will, so the cancer cells just happen to be very glucose hungry all the time, so they will take up and use a lot of that glucose. That being said, if you’re not eating enough glucose or not eating enough carbohydrates in general your body will break down your muscle stores to get that glucose.

And that is why you don’t want to be restricting certain food groups, especially carbohydrates because the rest of your body still needs the energy to carry on the normal functions of everyday life. So you shouldn’t be cutting out some of those food groups like the carbohydrates that are fueling the rest of your body too.

Andrew Schorr:
Okay. Another question, juicing. So people have all kinds of‑‑there are juicers you can buy, and your best friend down the street will say, oh, you’ve been diagnosed with cancer and you should be juicing, carrot juice and this juice and that juice. Any comment about that?

Alexa Welch
Yeah, so I just don’t see the issue with eating the whole food is. The whole fruit or the whole vegetable that you’re juicing, you’re taking out a lot of the fiber. You’re taking out a lot of what keeps you full, the substance to it, so then you’re having to spend a ton of money on groceries relies to get less benefit, if you ask me, because you’re taking out, again, that fiber that’s very beneficial for keeping you full, helps cholesterol.

So those are not things that you want to be leaving out of those foods that you’re taking in. You still get all the vitamins, all the minerals from those fruits and vegetables, but, yeah, eating the whole thing is more beneficial.

Andrew Schorr:
Okay. You were being conscious of our diet at the grocery store. What about the health food store, the pharmacy about dietary supplements? Comments about that?

Alexa Welch
Yeah. So one thing to be careful about any over‑the‑counter supplements like that are not FDA regulated. So you want to be careful that if you’re taking any dietary supplements, herbal supplements, any extra vitamin, C, A, whatever, that you’re clearing that with your doctor, your physician, your oncologist, your pharmacist, talking to your medical team about that and making sure that they are okay with you taking those extra supplements. Again, they are not FDA regulated, so just because they say something is in it, that hasn’t been tested. So you want to be very careful about that.

And some of those supplements can interact with certain chemo drugs. There are certain medications that you might be on every day, so you want to again clear that with either a pharmacist or a physician to make sure that it’s okay if you’re going to take any supplements like that.

Andrew Schorr:
Okay. So when I go to the gym they have a little store in the front, and they have those huge jars of protein powder. So you’re saying even that, check with my doctor.

Alexa Welch
Yes. Especially‑‑I mean, you want to make sure that if you’re going to do the protein powders like you want to make sure that it’s a brand that you trust. So in general bigger brands like Walmart’s brand or some of the‑‑like Abbott, who we get Ensure from, they have their own brand of protein. Some bigger brands like that are going to be ones that you can trust because if they were putting‑‑you know, you hear myths about people having like actually sawdust in their protein instead of real protein powder.

So those are the kinds of things you want to avoid. Usually big companies like that are more trustworthy because if they were found to have bad ingredients in their protein powders they would have more to lose essentially than some of the little companies you’re buying online that you don’t want to necessarily trust. Generally, if it says 100 percent whey protein 100 percent soy protein, those are a little bit more trustworthy.

And always, again, good idea to just run it by your doctor make sure they’re okay with it, or ask the dietician to read the label for you. Some grocery stores have dieticians that work there. Some gyms have dieticians, so use your resources.

Andrew Schorr:
Right. I will mention to people now, so we go to this ASH, American Society of Hematology medical meeting, thousands of doctors talking about myeloma among other cancers from around the world, and so now we’re talking about often four‑drug combinations for people with myeloma. So if you go into a store they don’t know that you’re taking drug A, B, C, D. They probably never heard of them nor know the profiles of those drugs and how it will line up with something they’re going to offer you. You’re not just a super healthy person who is taking no drugs coming off the street, so you have to check.

Okay. So, Jim, you’ve been listening, and you’re about to ride in a couple of days again 328 files. Now you’re of course just a subject of one, but, Jim, what do you eat? What is your diet, whether it’s when you’re doing these rides or just day in day out?

Jim Bond:
I get asked that a lot, and there’s a lot of people that really do focus on special diets. I do not focus on anything special in my diet. I focus on trying to maintain my weight. I do exercise, and for some reason since I’ve had cancer and the transplants I really have to make myself eat as much what I consider healthy food. For example, my lunch today consisted of a meat sandwich, potato chips and an apple. And that’s typical. And for breakfast I eat eggs, meat, toast and potatoes, which is‑‑turns out to be my best meal. It’s my best appetite. And a normal dinner, you know.

Yeah, we have vegetables. We have meat. I love corn on the cob in Ohio. It’s great. But I don’t worry about anything really special. I want to keep my weight up. So when I go in, and I do go in monthly for a bone strengthener I’ve been getting for 24 years now, the biggest surprise for me is, okay, how did I do on weight this month. And when it’s higher I’m happy. And typically the nurses frown at me because they’re trying to lose a little weight, but I’m always trying to maintain or keep my weight.

Now, another reason‑‑I do pound a lot of liquids. My kidneys, I was told, because of the type of myeloma I had, I was told, look, Jim, your kidneys and your bones are at risk. So they said drink, keep yourself well hydrated especially when you’re riding your bike in the summer in July in Ohio. So I drink a lot of water with something in it, you know, a Gatorade or something flavored, not just pure water. But that’s really important to me.

And yeah, it’s inconvenient. Gets me up a lot at night, you know, going to the bathroom, but I believe it’s worth it. And it drives my sodium down. When I get my chems every quarter my glucose and the rest of them are fine, but it’s all I can do to get my sodium into the normal range. So, believe it or not, even with the doctor’s okay they said, Jim, eat more salty foods, which I know is kind of weird, but that’s the way I roll, and so I really don’t worry about that.

It’s the bones though. I do worry about my bones. I’ve had a lot of bone involvement. I’ve got metal holding some of them together, but I’m lucky enough to be able to walk on my own, ride my bike. But it’s taught me, Jim, cut down on the risk. Stay off ice. Stay off step ladders, stay off stools. It’s just not worth it. So I try to do that.

But one comment you made is be sure to check with your doctor on what seems like it’s something that’s not worth it. Green tea is a good example of something a friend of mine who is a myeloma patient had no idea he should have cleared that with his doctor. Because he thought green tea, that’s fine, only to find out from his doctor, no, the medication he was taking was actually nullified by the green tea. So it’s really a good idea to run what you think is not very harmful, run those things by your doctor or nurse and make sure they’re okay with that.

But every case is different, like you said, (?) Jack, and for some reason it’s worked out pretty well for me. But I do take a few‑‑I do take a few vitamins that leading hospitals have recommended, and they’re for neuropathy and hopefully to keep the myeloma away. And I’m happy to share things, but you can get me‑‑you can find me on the internet or through somebody.

But the thing is you can’t just willy‑nilly take things. You’ve got to run them through your medical team because your case is, you’re own case, each case is different, and, sure, it’s great to talk to people but just run it by somebody.

Andrew Schorr:
Right. All good points. Okay. We’ve been getting in questions, and if you have a question now send it in to myeloma@patientpower.info, myeloma@patientpower.info.

Here’s a question we got in from Laurie. Laurie says, my husband has 13 vertebral fractures from his myeloma. He’s not a candidate for the various surgeries (?) Inaudible, kyphoplasty, etc., to do repairs, so he’s been doing plank exercises for two years, and he has a brace and support.

So one of the things he’s wondering is could tape, Melanie, like athletes do, kind of some kind of taping when he does exercise be supportive for him? Would that be a good idea, like athletic tape?

Melanie House:
Well, actually it’s a little bit different. I think the tape we’re referring to is a little different than athletic tape. It’s called Kinesio tape, and it’s been around since the 70s actually, and it is something that has been shown to help with musculoskeletal types of pain, so it could be worth exploring. If this is the same question I’m thinking of, this individual complains of the pain that radiates around the bottom of the ribs.

Andrew Schorr:
Correct.

Melanie House:
That sounds like it’s probably one of the intercostal nerves that could have some compression on it perhaps due to where the vertebrae has lost its height and therefore the rib is getting compressed and maybe pressing on a nerve. So yes, there’s some potential there. If there could be some lift appreciated on one of the ribs or just to create a little more space there.

The other thing that I thought about is when we’re laying flat‑‑I hear this all the time. I just had a patient today say to me, well, I was six‑foot‑three but not anymore, and this individual just had some back surgery done, fused his lumbar spine. And so I explained to him that it’s best if we put his back brace on when he’s laying down because that’s when the vertebrae are off‑loaded so your disks are at their maximal height, and if you can put a brace on laying down and put it on so it’s comfortable but snug, once you sit up you’ve done the supporting that you’ve needed to before everything tries to collapse.

Andrew Schorr:
Okay. Good points. Mike Furlow sending this question. He said he discovered myeloma when a plasmacytoma broke my humerus near my shoulder. My bone scan and CT scan showed no other significant lesions, but he later found significant damage to my right ankle during the surgery. So he’s wondering, is it safe to assume I have damage elsewhere? He just doesn’t know what to do. And so do I have to be particularly careful about bone injuries going forward. He’s worried. What do you say?

Melanie House:
Yeah. This sounds like a classic case where you know there’s got to be‑‑there could be some other problem in there but you can’t see it, you don’t know about it, so that fear creeps in, and that could paralyze somebody really from doing exercise that could be benefitting them.

So I would definitely recommend that he meet with his doctor or primary care provider who has access to his films, his recent scans, so like a whole‑body MRI or the PET scan, and go through, where are the lesions that I should be concerned about, and how would that guide my exercises or working with a physical therapist to come up with a safe program. Because if you don’t know where they are and you fear that there’s something electric there, I’m going to do the same thing. I’m going to think it’s safest to stay in my recliner probably.

Andrew Schorr:
Okay. So Jim mentioned a couple‑‑he mentioned a lot of significant things a minute ago, but he was saying that he knows given his bone complications there’s certain things that he’s going to avoid. He lives in Cleveland. In the winter he’s going to be real careful about ice. And if his wife says, gee, can you change a light bulb up there and it means going up on the step ladder, he’s not doing it. Okay?

Melanie House:
(?) And she probably wouldn’t ask.

Andrew Schorr:
She won’t ask, right. So the point is what about changing sort of activities in daily living so you can be active but be safe?

Melanie House:
Well, the first thing that comes to mind, and this is again going back to where I am most concerned for my myeloma patients, and that is the vertebral fractures because I‑‑it’s just‑‑it’s so sad to me when I see folks losing, progressively losing their height knowing it’s because these vertebrae are literally collapsing, and the biggest force that causes the collapse is flexion.

So when you think about in your daily life how often do you have to flex. Oh, I have to bend over to put my shoe on, I’m pulling my sock up. Oh, I dropped the paper, or maybe I’m picking something up off the floor that normally sits there like the food bowl for my cat. And so these motions can result in significant pressure forces going down the front of the vertebrae that actually lead to their collapse.

So one way that a person can change the way they’re moving throughout the day is hamstring stretching is a good start because the longer your hamstrings are the less you have to flex through your lumbar spine. But for others it’s beneficial to even use adaptive equipment. Like our occupational therapist will train people on how to use something called a reacher, and that just allows you to be able to bend over safely but not bend too far and still pick an item up so you’re at less risk of losing your balance and falling but also less risk of causing those flexion compression fractures of the spine.

Andrew Schorr:
Well, so you’re saying don’t bend down for the cat’s bowl. Maybe there’s some grabber or something will help you do it?

Melanie House:
Well, in that case‑‑I mean, there’s different ways to approach it. If you can squat rather than bend. The thing is that we all have our habits, and we don’t even realize what we’re doing until we see a video of ourselves or someone points it out. But if you know you’re at risk for compression fractures in your spine, going through some training to actually learn what ways could I move differently, what strategies could I use that are safe and still let me do the things I need to do, there’s always a way to accomplish it. It’s just that it’s very individualized for each person.

Andrew Schorr:
Okay. Remember, send in your questions to myeloma@patientpower.info.

Here’s another one again for you, Melanie, from Paula. Any thoughts on interval training or other techniques to help my body use oxygen more efficiently? So interval training, that would be like running for two minutes and then walking and running or longer. If you kind of start, stop, right?

Melanie House:
Yes. And interval training, I use interval training for patients in the hospital who can only walk 10 or 15 feet and have to sit and rest. We can call that interval training. Or, like you just said, it could be something like being on a bike or walking or jogging where you’re just doing that higher intensity and then you do the lower intensity.

So for each individual you have to find that right combination of exercise that’s still safe for you, but the first thing that I would think of in this question is again back to, okay, what are your lab values? If you’re hemoglobin is low, if you happen to be anemic, then you really do have to listen to your body. If you’re feeling short of breath, you should not be pushing through that.

So, yes, interval training would actually help you to build your endurance and your total distance that you could walk, and that to me suggests that you’re listening to your body and you’re slowing down when your body is telling you need to.

Andrew Schorr:
Okay. Alexa, lab values are not just about hemoglobin, but they’re also about creatinine. Jim was talking about kidneys. Certainly patients are at risk for kidney problems. My doctor says every time I see him, Andrew, drink more water, drink more water, drink more water. Jim was talking about that too. And also looking at whether we’re getting enough of different minerals as well. So that can show up in our lab values too. We should be aware of those, right?

Alexa Welch
Absolutely. Your doctor can test you for any vitamin deficiencies as well. Yep, your labs are very telling for, you know, if you’re hydrating properly, if you’re well nourished. But yeah, so definitely I think you’re doing the right thing staying hydrated and making sure you’re getting enough liquids. That’s definitely the best thing, one of the best thing for your kidneys.

Andrew Schorr:
There you go. I’m going to drink some more in a second. But I‑‑so, Alexa, and this is for you, Melanie, as well, but first you, Alexa. So what do we do? So you all are at the big university medical center, but even at clinics they often have a dieticians. Increasingly now some of the larger clinics have a physical therapist or maybe consulting one nearby.

Should we consult with you, not just if we’re having a transplant but we’re there for a clinic visit? Can we say, I’d like to see the dietician? I’d like to see the physical therapist because I want to be strong, I want to exercise, I want to eat right. I mean, that’s something we can request, correct?

Alexa Welch
Absolutely. I know here we have a dietician who works out patients specifically just for our cancer patients who are here for clinic visits. Usually her schedule is pretty flexible, and she is able to add patients on same day. So obviously I don’t know how it works everywhere, but every patient should be an advocate for themselves and how they want their treatment to go. So if they’re losing weight and they know they’re not supposed to, then you meet with the dietician and see what they can do differently for calorie boosting, for protein boosting, and same thing I’m assuming with physical therapy as well. You need to be an advocate for yourself. Ask for those consultations if you’re not offered them.

Andrew Schorr:
Melanie, you’d say that?

Melanie House:
Yes. I would agree. And the other thing is actually for physical therapy in most states it is a direct access option for you so you don’t often‑‑depends on what state you live in, but you don’t always have to have a doctor’s referral to be seen by a physical therapist.

That said, you’ve heard me say over and over, if I’m recommending that you see a physical therapist I want that therapist to actually be well informed of your past medical history, any of your lab values, any of your films and your imaging. So some facilities will still request PT counsel just so they have that physician connection and can get all those types of things that they need to know.

Andrew Schorr:
Right. Right. So, again, wherever you may be in the sound of my voice, if you will, all physical therapists are not equal. Melanie is an oncology physical therapist now, and she’s going to understand the risks you have in myeloma. We talked about bone, balance, the lab values, etc., maybe even complications from treatment you’ve had or medicines you’re taking. So somebody needs to see the whole picture. Same with a dietician, right?

Alexa Welch
Yes.

Andrew Schorr:
So trying to see people get the whole picture is important. You’re not going to have that at the health food store. You probably won’t have that at the pharmacy. You need to seek out somebody who’s knowledgeable about this.

So, Jim, a little bit about cancer patient consumerisms. You’ve had to really speak up for yourself. First of all, play a role in your care and speak up for yourself so you get the care you need and deserve. What you would you say to our listeners today so that when you think about diet, exercise, and going on with their life, which many people, and you’re a great example, now with myeloma can, what would you say to them so that they advocate for themselves to get consultants like these on their team?

Jim Bond:
Everybody’s different, and I believe everybody should handle their case the way they’re comfortable. Here’s what my wife and I are very comfortable with. I want to be an equal partner with my medical team. I don’t want to be the boss, and I don’t want to be bossed around. I want to have an equal vote.

And a good example of that is at about the 10‑year mark I was told here in my home town, Jim, you’re done with any treatments available. So you have to go to a hospice. You’re all done. And I said, no, I’m not going to a hospice. I said‑‑and that made the doctor leave the room, angered, but before he left I was able to say I know of a clinical trial that I had gotten word of in an out‑of‑town second opinion in those 10 years, and I said, I’m going to try to get in that clinical trial. And he told me I was wasting my time. I got in it. I was lucky enough to get in it anyhow. Had the leave town.

And I think that’s one of the great examples of being an equal partner. Okay? The doctor had certain advice, and it’s happened before in the 26 years. But I spoke up with my wife’s support, and I said, look, what if we tried it this way? What if we tried that three‑drug mix but without the steroid because I don’t really like to take steroids once I learned it caused one hip to have to get replaced. And the doc says, you know, I’m really not that keen on that, Jim, but I’ll go along with you if you want to run the risk. I said, yeah, I really do, and if it doesn’t work, if the numbers go up, we can always add the steroid later. And, you know, two months later the very popular myeloma doctor called me back and said, Jim, good call on your part. It worked fine without the steroids.

So advocate for yourself. Don’t be afraid to get educated. There’s lots out there. But if you don’t want to that’s okay too. If your way of handling it is different than that, I believe that’s‑‑your way is right for you.

One thing I’d add to the stretching and the back stuff. I’ve got severely curved spine. I’ve lost at least three inches of height, and I’m sure I’m at risk for something back there. But they don’t tell me, Jim, don’t bend or don’t do this. Well, I do stretch my hamstrings daily. That’s very important to me. And what I’ve learned to avoid is lift‑‑I don’t lift heavy objects. So how do you go along with your life? Well, you figure out ways. You know, it’s great that we have luggage that has those rollers on them. I have a briefcase that has rollers on it because I feel the pain. If I lift I’ll feel the pain the next day. So I stay away from lifting.

But, no, I just go ahead and do things. And I try to ask the doctors and nurses, tell me what I should not do, and I listen real carefully and being an equal partner I got to weigh all that, and I let them know where we’re coming out on things. But it’s fine to advocate for yourself and the longer each of you live with myeloma the more you’re going to realize, hey, there’s a lot of flexibility here. No one’s got the answer or we’d have a cure. So there is some flexibility, but you’ve got to use your good judgment and that of your medical team.

Andrew Schorr:
Great advice. So, Melanie, what do you want to leave people with on the importance of exercise wherever you are in your myeloma journey and having the right consultation so you can do what’s wise and what’s safe?

Melanie House:
The most important thing I can say is there’s no better time to start than now, and finding those things‑‑you know, think about what is it that’s important to me? What am I missing out on in my life that I want to get back to, and consult a professional to help them‑‑they will help you achieve those goals to get back to doing those things as best and as safely as possible.

Andrew Schorr:
I’d agree. You know, I have to get immunoglobulin treatment once a month for my‑‑related to my leukemia. Some other people may get that too. And yet in those times like now, in between, I travel. And, you know, so I’m going on with my life and thank god have energy and can do those steps I talked about. So I would urge you to go live your life. And your healthcare team will help you. You can do this exercise or that. And there’s Jim who’s not going to get up on the step stool, but he’s going to do that 328‑mile bike ride for the 12th time. Okay.

So, Alexa, a final comment from you about what you’d say to people about proper nutrition wherever they are in their myeloma journey. What would you say to them?

Alexa Welch
I would say listen to your body. If your body is telling you I’m hungry, eat. If your body is telling you I’m not hungry, maybe not eat but also recognizing that if that’s all day long that you’re not hungry maybe you need to set an alarm on your phone to make sure you’re eating properly. Wherever you’re at in your journey it’s important to listen to your body until your body can’t tell you what it needs anymore, and then after that then you need to start kind of taking over‑‑your mind has to take over and listen to what you need.

Maintaining your weight. And then, like I said, whenever you can eat from all the food groups, and then in the meantime when your struggling to maintain your weight or eat enough overall you want to use those supplements when necessary while talking to your medical team. And supplements I mean by the high‑calorie, high‑protein shakes, not necessarily the herbal supplements.

Andrew Schorr:
All right. Great information. And one great thing I take away from you too is should I need a transplant some day or I’m going through chemo again a chocolate milkshake is okay.

Alexa Welsh:
Yes, absolutely.

Andrew Schorr:
All right I won’t feel guilty about the ones I’ve had in the past. So, Jim, we’re going to leave it with you. So you have this bike ride coming up, the 12th one, for fund‑raising for the American Cancer Society that you wife started in Ohio, god speed to you, Jim. Are you feeling pretty good?

Jim Bond:
I am. I am. I had to shake off a bout of pneumonia a month ago, but I got the clearance to get back on my bike about three or four weeks ago. And they said, take it easy, and if you get tired, you know, get off your bike‑‑and I will‑‑and, you know, I’ve proven I can do it, but, you know. I think we have to all use our common sense on this stuff and live your life like you said. And we can do it. We can be long‑term survivors.

Andrew Schorr:
All right. Well, all the best to you. We are all riding with you, Jim Bond, okay?

Jim Bond:
Thank you.

Andrew Schorr:
All the best. Well, I want to thank Jim joining us from Cleveland getting ready for the bike ride in a couple days. Alexa Welsh joining us from the University of Iowa Hospitals in Iowa City, thank you so much, Alexa. And also Melanie House, joining us once again also from the University of Iowa Hospitals. Great information. Thank you so much.

I want to thank the Patient Empowerment Network for letting these programs flow and what a wonderful service it does to our myeloma community. And I want to thank the companies that have helped fund this program, AbbVie, Takeda and Celgene, thank you for being supporters of the myeloma community.

Remember, there’s a replay that will be available to you soon. Share it with others you know in the community. There will be video clips and sound clips with Jim that will be coming up. There will be a transcript, all coming your way. And discuss it and make sure that you connect with not only other people in the community but people like Alexa and Melanie who are very specialized, who can help you have the right diet and the right exercise for you.

In Quebec City, Canada, I’m Andrew Schorr. Thanks for joining us. Remember, knowledge can be the best medicine of all.


Please remember the opinions expressed on Patient Empowerment Network are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

How Can Patients Learn About New Myeloma Treatments?

Living Well with Multiple Myeloma

How Can Patients Learn About New Myeloma Treatments? from Patient Empowerment Network on Vimeo.

Downloadable Program Guide

Getting the right cancer care calls for sound, up-to-date information and open dialogue with your healthcare team. As a patient, how do I stay informed about new treatments in development for multiple myeloma? What are the considerations when choosing treatment that’s right for me? In this video, experts will help you better understand the latest multiple myeloma treatments for patients who are actively seeking the best care available.


Transcript:

Jack Aiello:
Hello and welcome. Thanks for joining today’s Patient Empowerment Network program. We thank AbbVie Incorporated, Celgene Incorporation and Takeda Oncology for their ongoing support.

We have a lot to cover, and we’re so happy that you joined us. My name is Jack Aiello, and I am a 23‑year survivor, myeloma survivor, this is. I learned that getting the right cancer care calls for sound, up‑to‑date information and an open dialogue with your healthcare team.

Some questions to ponder as a patient: How can I stay informed about new treatments in development for multiple myeloma? What are the considerations when choosing treatment that’s right for me?

We have already received a number of your questions today, and we’ll get to some of those answers, but first I’m really pleased to introduce our distinguished guests. Dr. Amrita Krishnan is an M.D. She’s the director of the Judy and Bernard Briskin Myeloma Center. She’s a professor of hematology and hematopoietic cell transplantation at the City of Hope. Dr. Joshua Richter is the assistant proper of medicine at the division of hematology medical oncology at the Tisch Cancer Institute of the Mount Sinai School of Medicine. And Kristen Carter is the advanced practice nurse at the University of Arkansas Myeloma Center.

Before we begin answering and addressing some of the questions, I want to make sure you are aware that this webinar is not a substitute for medical advice. You really need to refer to your medical healthcare team. And if you have questions during this webinar you can e‑mail them to myeloma@patientpower.info, and we will try to get to as many of those as possible.

I mentioned I was a 23‑year survivor. I was diagnosed in 1995, and back then treatment decisions were pretty easy because there weren’t many treatments. Either you took melphalan prednisone, a couple of pills, or you went the transplant route, which I ended up doing. I’ve learned an awful lot in 23 years. I facilitate our local Bay Area myeloma support group, and so the questions I’ve seen you already asking today and the questions we’ll be asking our doctors are the same questions that are asked in our support groups as well. So let me begin.

The first question has to do with‑‑we hear about new drugs that are out there that have recently been approved, but how do I learn about drug approvals? What’s the process for approving a new therapy, and should I attend as a patient these medical conventions I hear about like ASH or ASCO, and if not, how do I learn about these new drugs?

Dr. Krishnan:
Yeah, I think people are welcome to attend meetings such as ASCO, but you know there are 30,000 people there and so it’s a fairly overwhelming experience, and it’s very hard to drill down. And, to be frank, a lot of what gets‑‑the mix of what gets presented at most of the national meetings in regard to very, very early‑stage drugs that are only available in clinical trials. And then, yes, we do have Phase 3s that are randomized trials presented where drugs are pretty much ready to be approved or already approved and that’s confirmatory data for those drugs. So it’s a big mix.

I think, you know, for patients in terms of getting the most sort of bang for their buck is sort of doing things like you’re already doing such as the seminar you’re hosting right now I think is invaluable because it really helps drill down all the data for those meetings. And some of the other patient education forums I think are‑‑again because I think we’re happy, we’re always happy to speak at those types of events to help sort of synthesize that data in a more kind of (?) coherent, how‑can‑I‑help‑you forum.

Jack Aiello:
Any additional thoughts on that, Dr. Richter?

Dr. Richter:
Absolutely. I think that the patient support groups from different programs run by the MMRS and the IMF as well as the Leukemia and Lymphoma Society are extremely helpful. There are many of these programs, and if you go to these organizations’ websites there are frequently programs that may be near where patients are.

The other thing that I think is key as part of a patient’s and their caregiver’s myeloma journey is at some point during your treatment it’s really worthwhile to come to a center such as the people represented here. You know, University of Arkansas and City of Hope and Mount Sinai are all extremely advanced in terms of their myeloma knowledge, but there are many others across this country. And I think as patients it’s important to have a deep connection with your care team, and you can still receive all the care with your local team, but at least one point during your journey going to one of the centers like the ones on today’s panelists I think is worthwhile to find out what is on the horizon and how they can work with your local physician and nurse practitioner team to form the best plan for you.

Jack Aiello:
One thing I’ll add on to what you said about the information provided by organizations like the International Myeloma Foundation, like PEN empowerment network, like the Multiple Myeloma Research Foundation is that they have videos and webinars very quickly after ASCO or ASH meetings that will summarize what the major outcomes were at those meetings. And they are intended for patients, and they really are excellent, excellent vehicles for learning.

Kristen Carter, so I have a question targeted for nurses, I think, and that is as a patient how do I communicate or partner best with my doctor on treatment decisions? What do you find that works regarding being diagnosed with something called myeloma, which you’ve probably never heard of, hearing all of these overwhelming terms of IgG and too high a level of protein, which sounded always good to me, how do you‑‑how should patients be interfacing with both their doctors and their nurses?

Kristen Carter:
Well, all my patients have my cell phone number so they tend to call me if they have any questions, but I always tell my patients make sure you write down questions because you know as well as I, when you get in there in front of a doctor who’s got a whole list of patients for the day and they’re seeing you, they’re giving you all this information, and I always call it the deer in the headlight look from the patient because they’re brand new. Writing down questions that you think of is always very important.

Having a family member that’s right there with you, that maybe they’re thinking of things that you haven’t really thought to ask. As we’re going over side effects and treatment decisions, taking notes is very important because I always have patients, and I will have patients four or five years later, go, remind me, what is my subtype. And we go over this every time and you go, I thought we were doing a really good job of educating. So if you don’t understand something ask to repeat the information. And I always repeated back to the patients and have them repeat it back to me. That way I can see if they really understand what we’ve gone over.

And just make sure there’s an open dialogue. I always tell my patients don’t suffer in silence. If you have a side effect we need to know about it. If there’s something you don’t understand we need to know because that way we can ensure that you’re not only understanding but getting appropriate treatment, and if there’s side effects that we need to know that we can make adjustments.

Jack Aiello:
The doctors especially seem very busy and sometimes in a little bit more of a hurry than you as a patient want them to because it’s difficult for you to absorb the information that they are providing you. How do I slow them down? How do I make sure that I do understand what they are saying, Kristen?

Kristen Carter:
Having a list I think is a really good way to slow down.

Jack Aiello:
I agree.

Kristen Carter:
I have patients that come in and they’ll have their list, and I usually go in first. So I work for Dr. Van Rhee, and we have‑‑we manage, actively manage about 700 myeloma patients from all over the country. And so these patients will come in sometimes a thousand miles to see us. We don’t want them to be shortchanged on their time because they’ve travelled all the way from Arkansas, and they’ve done all the workups, and we certainly don’t want them to feel like they didn’t get the time after spending money and travel time to get to our academic center. So usually I will go in first and answer any questions that I can answer, and the list is always so important. And we’ll say, sit back down, we have the list, and what I can’t answer the doctor will answer.

And again I do provide an e‑mail or a cell phone, and I have patients that will e‑mail me a list of questions that I can turn around and answer for them if they didn’t get the information. So I think definitely having a list, having family support if it’s available to come with you, I think that does kind of slow the doctor down.

And if you don’t understand something you just stop the doctor before they leave the room. Hey, I didn’t understand that. You are your own patient advocate, and you’ve got to make sure that you speak up if there’s something you don’t understand or if there’s something you’re not sure about. Or if there’s something you’re not comfortable with in the treatment planning you need to vocalize that with your doctor or nurse.

Jack Aiello:
Dr. Krishnan or Dr. Richter, any other things that patients have done when you meet with them that you want to pass along to patients on this call?

Dr. Krishnan:
I think the one thing to be honest I’ve started writing down stuff that the patient said myself because a lot of patients start getting focused on taking notes, and they don’t want to miss anything, but then it’s very hard to absorb and take notes at the same time. So having someone with you to be your scribe is very helpful. Some doctors, you know, don’t mind patients recording them. Some are less comfortable with that. So that’s something else you can consider is asking your doctor if that’s an option.

I think the other important thing to remember is all the information we get, especially when we talk about transplant, that’s not going to be the first time you hear it, so don’t‑‑it’s not like you need to understand it all right now. This is just information gathering, and that information is going to be repeated again and again by multiple different people.

Jack Aiello:
And Dr. Richter?

Dr. Richter:
I think everything that’s been pointed out is great. I would encourage patients that if they want to record to ask first. We’ve definitely had some patients where all of a sudden their purse starts beeping and I ask what that is, and they say, oh, I’ve been recording you. I have no problem, and most of us don’t as long as we’re told about.

I think it’s also‑‑as much as the care teams set goals for each appointment it oftentimes can be a good idea for patients to set goals of what they want to get out of the appointment. So not every appointment is going to be soup to nuts, everything from the diagnosis to the whole treatment, but this appointment, what is going to be my next step with treatment and how do I deal with my toxicity. This next appointment I want to find out about transplants. So setting a couple of discrete goals I think really helps both sides to accomplish what we need to.

Jack Aiello:
Yeah, I agree. Dr. Richter, you brought up some of the resources earlier. I don’t know, when I was diagnosed in ’95, back then we weren’t sure if the internet was even going to be a success, so resources were quite limited. What do you find patients today using, and how do you‑‑you know, some doctors, patients will tell me, will say stay off the internet, don’t go there, and that’s not the right answer. So how do you advise patients today about that?

Dr. Richter:
So I think that this is something that we can’t avoid. It’s definitely a double‑edged sword. What I always encourage patients when we talk about different things is I direct them to certain sites that I know have vetted information that’s been created by the myeloma community, and it’s very accurate and realistic. So sites from the imfatmyeloma.org and the MMRF, Multiple Myeloma Research Foundation I found to be very important, and both of these organizations have handouts that we often give patients to augment things.

One of the other resources that I‑‑you know, is definitely another double‑edged sword, is clinicaltrials.gov. And I even hesitate to mention this, but I think it’s a valuable resource. I think as patients with myeloma are extremely savvy and oftentimes come in knowing data even before I’ve even heard it. It’s quite amazing. The benefit of clinicaltrials.gov is it lists all of the trials that are done in all of these institutions. It provides some overview about it, about whatever the trial is, some information as far as who may or may not be eligible, and it lists the institutions and sites that are running the trial with contact information.

So I think one of the benefits there is that people start hearing about all of these different trials on sites like myelomacrowd, LLS, MMRF, and if you’re interested in seeing if there’s an institution by you it’s a great way to drill down and find out the closest institution and a contact that may get you the right place.

Jack Aiello:
There are some good front ends for clinicaltrials.gov as well. Something called SparkCures, S‑P‑A‑R‑K cures. Something called the myeloma matrix from the IMF. Something called Smart Patients. And there are also organizations like the Leukemia and Lymphoma Society, like the IMF and MMRF who have clinical trial specialists that you can talk with, that given your situations they will help you to direct you to the right clinical trial as opposed to starting off with clinicaltrials.gov. So, I agree.

Same question for Dr. Krishnan.

Dr. Krishnan:
I think‑‑

Jack Aiello:
Resources that you have found particularly useful to provide to your patients.

Dr. Krishnan:
I think actually Dr. Richter pretty much covered them in terms of the IMF, the MMRF and what you have added to it actually. I learned some more resources too, so thank you guys.

Jack Aiello:
And same question for Kristen Carter.

Kristen Carter:
I always tell my patients to go to reliable resource sites like the IMF and the MMRF because I definitely have had patients call me later. I had a patient that was looking up fatigue in myeloma and he called me, and he goes, you didn’t tell me that I was only going to live five years, because he looked on the internet and it said five‑year survival is 48 percent at that time. He’s nine years in complete remission at this point, but I had to talk him off the ledge because he had been on the internet and he had read that, and after we had already gone over kind of the statistics and things and his individual myeloma. I said don’t worry. Don’t look at those statistics. Let’s worry about you.

So definitely, like Dr. Richter said, go to resource sites that are reliable, like you said. Leukemia and Lymphoma Society, IMF, MMRF, those are the reliable sites to go to.

Jack Aiello:
For those listening, don’t forget you can e‑mail us questions at myeloma@patientpower.info.

Doctors Krishnan and Richter, let me ask you another question. In June it’s always a big month, ASCO happens, the clinical oncology conference in Europe they have something similar, EHA. Can you give us some insights? I’ll start with Dr. Krishnan. What were some of the highlights that came out of those large cancer conferences for myeloma patients?

Dr. Krishnan:
Sure. So I had the honor of giving the ASCO highlights actually at ASCO. It was 7 a.m. Sunday morning, and surprisingly we had a full house, which tells you the interest in myeloma. So the highlights in that session were really focused around relapsed myeloma, not surprisingly. So combinations of venetoclax, the drug approved for CLL, using it combination with carfilzomib, proteasome inhibitor, so we know venetoclax work the best when it is combined with proteasome inhibitor. Most of the data we’ve had so far has been with bortezomib, so this was the first trial presenting the data with carfilzomib, and that included patients who have had prior bortezomib or who were bortezomib refractory. So that was exciting.

Jack Aiello:
Just to clarify, if patients aren’t aware, Velcade is the same thing as bortezomib.

Kristen Carter:
Thank you.

Jack Aiello:
Yep.

Kristen Carter:
You know, the caveat in that trial was that patients had to be carfilzomib naive, so, you know, we clearly don’t know when patients have had prior carfilzomib exposure if they received the same degree of response, but the response rates were very high, and patients who had a particular translocation that venetoclax targets, the (11;14) translocation, the response rate was 100 percent. Again, these are small numbers of patients, but it is interesting data both in regards to the targeted therapy as well as in the idea that we can combine venetoclax with different agents.

The other thing I would highlight was the CAR T‑cell data, which I think of huge interest to patients. This is now an expansion cohort. So the initial data we saw was in about 20 patients. Now we have data‑‑it’s still not huge numbers, 40 patients, but what we did see was that the response rates remain very high, about an 80 percent response rate.

We learned some interesting things that previous trials and the CAR‑T in this construct, the Bluebird trial, targeted BCMA. And the initial phase of the trial required that the patient have a certain amount of BCMA expression on their plasma cells. And that was actually a hard target to get. Some patients were excluded. What we learned in the expansion phase is that the percent of BCMA expression on the myeloma cells really didn’t matter in terms of response. And that as an (?) Inaudible criteria is no longer an issue moving forward.

We learned that the cell dose of T‑cells infused matters in terms of response, that there is a certain minimal threshold of T‑cells needed. And we also did learn in terms of toxicity signals that we do see cytokine release. Fortunately in the majority of patients it’s been mild. I would think those are the two biggest highlights.

And the other one I wanted to briefly touch upon was the study looking at weekly carfilzomib. So it looked at weekly compared to a traditional carfilzomib schedule, and showed that a weekly higher dose was tolerated well. Interestingly, we actually saw a better progression‑free survival in the patients receiving weekly compared to the twice a week. I haven’t drilled down enough yet in that trial to know is that because of toxicity, or what are the reasons, but it just shows us that you can give weekly higher dose carfilzomib.

Jack Aiello:
And, Dr. Richter, do you want to follow‑up on any of those?

Dr. Richter:
So those were absolutely the big highlights. Everyone is very excited about the potential for CAR‑Ts and myeloma.

The other studies that I would high rights that came out of EHA and ASCO this year focused on combination therapies. It is still a goal if we can in patients to put them on multi‑drug combinations using multiple different mechanisms of action to treat the different types of subclones within the disease. So there has been data recently on three‑ and four‑drug combinations and how they may benefit patients.

So the combination of elotuzumab, pomalidomide and dexamethasone, the data was presented at EHA and was very encouraging as a really great option for patients with relapsed myeloma as well as that same combination, elotuzumab, pomalidomide and dexamethasone with bortezomib added to that. A four‑drug combination, but again in the right population this can be both tolerated and efficacious, as well as the three‑drug combination of Velcade, pomalidomide and dexamethasone.

And I know a lot of this may seem like, you know, they used to call it word salad where you’re just mixing up different letters and combination and it doesn’t all make sense, but that’s part of what our collective job here is to look at all the different options and all the data and drill that on what the exact correct regimen is for an individual patient. For some patients four or three drugs may be too many and two drugs may be appropriate, but in the right patients we may need to combine three or even four drugs to get the response needed.

Jack Aiello:
Can you say a little bit more about what makes the right patient for the right drug combination?

Dr. Richter:
So I think that’s‑‑there’s three different factors. There is treatment factors, disease factors and host factors that we take into account.

Treatment factors means have we given a previous line of therapy and did it cause toxicity. So if we’ve given drug A and the patient had horrible neuropathy I would not utilize that drug and may think twice about drugs that are similar. Host factors are things such as the patient’s age, their frailty, other co‑morbidities that they have that may affect the choice of drugs that we give. And disease factors are crucial. How quickly is the disease progressing? Is it taking other forms such as forming tumors such as plasma cytomas? Is it involving other areas of the body?

And as Dr. Krishnan pointed out, we’re starting to understand that certain drugs may have better efficacy in certain subgroups of patients. So for example venetoclax in patients with that (11;14) translocation or something called Bcl‑2 overexpression, we may utilize a drug like that in a patient earlier rather than later because that‑‑realistically, they’ll have a higher response rate.

Jack Aiello:
Thank you. We have a question from a caller named Mona who is a myeloma patient and did an allotransplant. Kristen, I’m going to ask you this question. She did an allotransplant in 2012. She’s been on Revlimid maintenance now for six years, and she’s a university instructor and leads a very active working life. Her question, though, has to do with does she take‑‑and this will be actually for all of you‑‑do I take‑‑in fact, let me ask this of Dr. Krishnan. Do I take Revlimid, continue to take Revlimid indefinitely, or is there a time when I can actually stop taking it?

Dr. Krishnan:
So the allo setting is a little bit different and because we really have no large trials. The only trial we have using‑‑two trials using Revlimid after allotransplant, one in the US, one in Europe, it was actually quite a challenge. A lot of patients developed graft‑versus‑host disease, so really only a minority of patients were able to tolerate it, and to say on it for as long as she has is actually quite impressive. So, honestly, in her case we don’t have any clear recommendation.

In the autologous setting we have differences right now. We do have‑‑

Jack Aiello:
I misspoke. Hers was an autologous transplant. I’m sorry.

Dr. Krishnan:
Okay. In the autologous setting we have the US approach which was based on the CALGB CTN trial, which randomized patients after transplants or observation or to lenalidomide indefinitely unless they developed toxicity or the myeloma progressed.

The French had a trial that actually started out with the same idea, indefinite lenalidomide. They ended up abrogating it because of their concerns for toxicity. The patients in that study had about 18 months of lenalidomide.

And then lastly there’s a big trial that’s going on right now that the IFM Dana‑Farber trial that in this French part patient after transplant might get lenalidomide only for a year. The US part patients get lenalidomide indefinitely, so it tells you that, you know, we can’t really‑‑don’t know and we can’t agree.

The last point I would say is a trial, which you’re very familiar with, Jack‑‑you’ve been hugely instrumental in getting it off the ground, is trying to answer that very question which is (?) Inaudible transplant get randomized to lenalidomide or lenalidomide and daratumumab, and then after two years if they’re MRD negative, so really looking very, very deeply at their myeloma, patients will have a second randomization, so a group of patients both stop therapy, so that will answer the question can you stop therapy if you’ve had a very, very good response.

Jack Aiello:
Kristen, I know you have lots of patients that come from really all over the world to the University of Arkansas there. There is a patient named Renee who is South African who says, I don’t have access to many of the newer myeloma medicines, and I wonder if there are assistance programs out there to remedy this. Are you familiar with being able to help someone like that?

Kristen Carter:
We have actually had several patients that this is a big issue with. I have a guy that is from Trinidad and he can’t get a lot of the medications there. And I have someone from the Bahamas saying they have a lifetime cap on their insurance, and then that becomes a big problem especially assess to medications in other countries. We actually have had people fly in to get medications and fly out, and we were actually able to get it through patient assistance here in the United States, but not everybody has the means to do that.

Jack Aiello:
Yeah.

Kristen Carter:
And so‑‑I mean, it is a big issue. I mean, even to try to get Revlimid in some areas or Velcade in some areas, it’s just not on their protocol in that country. And even here in the US dealing with the VA and certain places like that where different combinations have to be approved before they can get that. So that’s always a challenge, is access to medication and different regimens that may not be approved overseas, Canada, the Bahamas. European countries still are not utilizing the medications. So we’re very fortunate to live in the United States and have the access to the different combinations that we have here.

Jack Aiello:
Do any of you hear patients who have those problems trying to access generics, and do you have any feeling for whether that’s a good idea or not?

Dr. Richter:
I think it’s a difficult thing to ask because unfortunately there are well known disparities in terms of access to care within this country and in other countries, and a lot of the patient advocacy groups are trying to do what they can to help a lot of these patients. In terms of what patients ought to do if they can get access, I think it depends on the source. There’s obviously some legitimate channels that people can utilize to try to get access to drugs that may not be readily available.

Obviously, in the day and age we’re in I think there are some probably shadier ways people can get drugs, and it will be unclear how real they are. So I think that if you have access to any of these things it is probably best to bring them to a pharmacist to evaluate to ensure that if you are able to get these drugs from some other means other than the purely legitimate routes that you are taking the correct things and nothing that’s dangerous.

Jack Aiello:
There were a couple of maintenance questions that came in, and I’ll try to summarize them. David asked, rather than starting maintenance at 10 milligrams or 10 milligrams every other day of Revlimid, why not start at a lower dose, you know, two and a half or five milligrams or no treatment. And maybe you do that when you look at someone’s age and quality of life. And another person, Greg, just is flat‑out asking what is the best maintenance therapy to remain cancer‑free.

So, Dr. Krishnan, can you talk about how do you recommend maintenance treatment?

Dr. Krishnan:
Some of it is (?) imperious, but we do know that there is a dose response with Revlimid because we do see patients who, for example, were on maintenance at a lower dose and their M spike starts trending up, we increase the dose and we do see a gap but sometimes patients respond. So the dose that was picked was sort of a balance of trying to get a fairly active dose but understanding toxicity.

In newly diagnosed patients we use 25 milligrams, but in the maintenance setting we use 10 to 15 milligrams understanding there’s more hematologic toxicity after stem cell transplant so it would be hard for patients to stay on 25 milligrams for any length of time. So I think we’ve tried to balance that in our sort of initial recommendations for the starting doses of maintenance therapy.

In regards to the question what’s the best maintenance, I mean, that’s a great question and the answers still remain unknown. We just saw a press release from Takeda about ixazomib. We don’t have any details yet, but that it’s the oral proteasome inhibitor compared to placebo after transplant improved progression‑free survival. Again, don’t know anything yet about those patients within a certain subgroup, how big a benefit was it. So we’ll all waiting for the ASH meeting this year to hear that. But, again, it speaks to the question what is the best maintenance, and we’ll continue as we get new drugs study them both in relapsed, up front and in maintenance.

Jack Aiello:
Dr. Richter, as patients, though, get older and look at that quality‑of‑life issue, how do you adjust maintenance dosages, or do you decide maybe they shouldn’t go on maintenance?

Dr. Richter:
I go back to what Dr. Krishnan said which is true, which is the dose that was picked and was studied in CALGB study showed a progression‑free and overall survival, so that is our base from where to start from, but ultimately we then have to individualize from there. There are definitely patients that maintenance therapy absolutely benefits. There’s patients that unfortunately in order to provide a benefit from maintenance they have own toward toxicity, either hematologic with lowering of blood counts or other toxicities.

And on the flip side there are some patients that we feel may have higher risk disease where giving one or two drugs may not be the ideal maintenance, but there are some ongoing clinical studies looking at three drugs as a maintenance approach. And although this may seem quite extreme to some for those subset of myeloma patients with such high risk disease that we need to start enrolling in these trials to look at ways to offset their risk of having early recurrence. So I think we have what is the standard.

As Dr. Krishnan pointed out, there is the press release which we haven’t seen the hard data from yet with ixazomib, but this is going to be changing over time, and it needs to be individualized to the actual patient, their side effects, their type of disease along with the most up‑to‑date data.

Jack Aiello:
Kristen, a person named Donna from Nova Scotia asked, and I’m sure you are asked in a lot. And that is, I have severe neuropathy from Velcade. What treatments are there for severe neuropathy? And anyone can chime in, but I’m guessing you get this question.

Kristen Carter:
Yeah, that’s actually one of the most frequent questions I get. Especially when starting maintenance because we actually do do triple therapy maintenance utilizing Velcade. And the good thing is now that we have subcutaneous Velcade definitely the neuropathy is a lot less so we don’t have to worry about as much. I always tell my patients that we need to know about neuropathy before it gets grade 3. If you have grade 3 neuropathy I did not do my job.

We need to dose modify early. We need to start drugs like gabapentin or Lyrica. I’ve used Cymbalta. There’s several different ways to treat peripheral neuropathy, but the main big thing is dose modification and dose interruption if you have a grade 2 or more neuropathy. That’s when you start to need to think about dose modification. We do not want it to get to painful neuropathy and continue treatment.

And then you look at the clinical research on the newer drugs like Kyprolis or ixazomib that does have less‑‑less neuropathy associated with those drugs, so I’ve definitely used Kyprolis when someone had neuropathy with Velcade with not having further neuropathic symptoms with utilizing that drug. There’s lots of other options out there that does not have the associated neuropathy symptoms.

But the big takeaway would be let’s not let it get to grade 3 before we’re talking about neuropathy. So actually every visit, we talk about neuropathy at every visit. I ask that question at every visit, so preemptively educating the patient that these are the symptoms that you may develop, and also letting the patient know, hey, let me know if you’re having symptoms.

Jack Aiello:
Doctors Krishnan and Richter, any added insights in terms of how to fix bad neuropathy? And, by the way, if you do have any of that will definitely fix it, I will be in your office tomorrow.

Dr. Krishnan:
Absolutely.

Dr. Richter:
I think there’s a few‑‑the number one thing that Kristen brought up, and this is literally the biggest issue, is open dialogue with your care team. That is‑‑she is 100 percent correct. It is a lot easier to prevent than to treat. Unfortunately, the drugs that we utilize do not work in everyone. The other modalities that could be tried, I’ve had some success with Cymbalta, which she mentioned, also some of the tricyclic antidepressants drugs, like amitriptyline, nortriptyline may offer some help there.

But, again, this is really all about trying to prevent it and picking the right drugs and the right dosage. There are some newer‑‑we’re starting to work on some clinical trials here for some novel approaches, but nothing as a cure‑all just yet.

Jack Aiello:
Dr. Krishnan, anything else?

Dr. Krishnan:
No, I think we’ve covered every single drug that we’ve tried for neuropathy.

Jack Aiello:
I’ve had a few patients tell me that maybe acupuncture has helped them, cocoa butter has helped them, acupressure, acupuncture, as I said. But as you say there’s nothing for everyone, and it can be really debilitating if it gets too bad.

Dr. Richter:
There’s one other‑‑and again, neuropathy can come in a variety of ways. There’s a numbness but there’s also a pain. For people who have extreme pain there are compounding pharmacies that can a make certain combinations of lidocaine and some other medications that may help numb it. The other one‑‑and I know this sounds very extreme and not all places do this‑‑there are various studies looking at compounds of ketamine. And I know this sounds crazy, ketamine, which is also known as Special K, which is used in a variety of other nonclinical settings. There’s been some conflicting studies looking at the use of ketamine in peripheral sensory neuropathy, and I’ve had a few success stories in patients with severely refractory peripheral neuropathy working together with our pain management colleagues to compound the right dosage, but it can be tricky to use.

Jack Aiello:
Okay. Want to thank people who have already sent in questions, and for those you just joining questions can be sent in to myeloma@patientpower.info.

I thought that one of the questions came in from an individual named Jack‑‑that wasn’t me, but he asked a really good question. And he said essentially I don’t understand why newly diagnosed patients are often given the standard myeloma treatment regimen called RVD, Revlimid, Velcade and dex, from the beginning. Would it not be equally or better to maybe start treatment at lower dosages to see what the initial response is and then titrate up to the higher doses if needed? And perhaps if they were just as effective this would reduce side effects and toxicity.

I know, Dr. Richter, this question interested you as well, so how do you answer that?

Dr. Richter:
Again, it’s a patient‑by‑patient basis, and although RVD is an extremely common initial therapy if you look at the MM connect data about most utilized therapies in up front patients it includes RVD, Velcade, Cytoxan, dexamethasone but it also includes a fair amount of Velcade‑dexamethasone alone or Revlimid‑dexamethasone alone in up‑front therapy.

The rationale to give more drugs up front comes from our knowledge of the biology of myeloma and that we recognize that myeloma is difficult to kill in a human being, that plasma cells are very robust, and we do have evidence that the deeper responses that we can achieve, so getting patients to a partial remission, very good partial remission and down to the levels of complete remission with MRD or minimal residual disease negativity seemed to impact overall outcome, and patients who achieve those deeper remissions tend to do better.

So that’s the reason why we tend to start these multi‑drug combinations at fair doses is to attempt to achieve those deep levels of remission because those tend to be the patients that have better outcomes. Now, this is not wholly true. There are patients who can get two drugs and do extremely well, but as we have just the data that’s out there to go on, this leads us to choose this approach.

Jack Aiello:
Yeah. Do you agree, Dr. Krishnan, I presume?

Dr. Krishnan:
I do. I do want to make one comment that it’s not that every patient gets RVD, but, I mean, frankly, our interest is not taking away drug it’s in adding more drugs because‑‑and we get high response rates and we want to actually‑‑we think that the toxicity profile is manageable for the gain you get from deepening it responses.

Jack Aiello:
Dr. Krishnan, I thought Greg asked a million‑dollar question here. After achieving remission and completing maintenance what are your best resources for options to maintain the remission and avoid relapse?

Dr. Krishnan:
I think a lot of that depends on what treatment you had originally, as Dr. Richter said, the biology of your myeloma. Some people have a more aggressive cytogenetic profile, for example, so we tend to treat them more aggressively and continuously. I think just, again, that’s a very individualized to the patient, but think the one take‑home message I would say is that myeloma is different than a lot of other cancers in the sense that we really don’t stop treating, that we continue therapy, and this concept of maintenance is very sort of germane to myeloma.

And, frankly, other diseases are starting to adopt it more now. We see in the lymphoma space more in the concept of maintenance now. And you could argue in breast cancer with hormonal therapy patients are on a drug for extended periods of time. Those are eventually stopped, so we hope in myeloma we get to be stopped, too.

Jack Aiello:
Kristen, I have had people ask me since I’ve been diagnosed a long time ago, what do I do nutrition‑wise? And I don’t ever have any good answers for that, and I’m sure you’re asked that question. Do you have any good answers for nutrition to help benefit myeloma patients?

Kristen Carter:
I tend to be‑‑I like to look at the whole body. I’m definitely a person that adopts a very clean diet and exercise program myself personally, and so I think that nutrition makes a huge difference just in everyday life. Now, do we recommend an alkaline diet and a ketogenic‑based diet? Absolutely not. If you want to do that, we’re welcome to let you do whatever you feel comfortable, but I do tell patients that it’s very important to continue to eat good, nutritious‑good nutritious diet.

And also exercise. I think it makes a huge difference in fatigue and overall well‑being to get good exercise and have just a well-balanced diet. But we still do not adopt, you know, specialized diets, sugar‑buster diets for myeloma. I have actually had patients that we’ve gotten after they’ve done two years of alternative therapy, and if you want to complement your treatment with alternative therapy we say as long as it doesn’t interfere with the type of therapy that we’re prescribing, go for it.

But as far as doing alternative diets and therapy, we still have not adopted that or seen a huge benefit to the patients. So I just tell my patients to live your life, have a good nutrition and exercise program.

Jack Aiello:
Yeah, I agree. Well, I think Lonnie asked a question that’s been asked for 15 years at least, and that is whether to get a stem cell transplant or not. And specifically how does one make a sound decision about that? I’ll start with Dr. Richter.

Dr. Richter:
I appreciate starting with me, although for what it’s worth Dr. Krishnan is actually director of transplantation services. But I think this is a personal decision. As drugs have gotten better and better it is definitely come into question about the role of transplant. Many years ago when the only options we had were steroids, melphalan as pills and a combination called VAD I think it was very clear that autologous stem cell transplant was very much the way to go.

As novel therapies have come outed it continues to come in question. That being said, the data to date has shown that for those patients who are eligible to undergo autologous stem cell transplant there continues to be a benefit for patients who are able to undergo that. Now, what that means is fairly vague, and it differs from country to country. In the United States there’s no absolute age limit, but physiologic age comes into play as much if not more so than chronologic age, so I still think that it’s an important part of therapy.

This will‑‑you know, I think we always ask as we get new therapies is transplant going to go away, and what I always say there’s two reasons why I think transplant is going to be here to stay. Number one is patient selection. There are certain patients that we can give a stem cell transplant who will remain in remission for many years if not longer, so it still represents the best therapy to get those really long‑term remissions. And as we get better data behind us we’ll know, be able to select out who is the correct person to transplant who is really going to get that great benefit.

And one of the things that’s evolving in terms of new technologies is post‑transplant therapy or give‑back. So the question is in the next five to ten years are we going to start to see things like post‑autotransplant (?) carts or post‑transplant placental‑derived national killer cells or some other give‑back post transplant to augment their therapy so that once we get that deep remission with a transplant we can give another immune‑based therapy to push them even farther and achieve an extremely long remission if not potential cure. But I absolutely would love to hear what Dr. Krishnan has to say about the subject.

Jack Aiello:
I do too, but that’s why I asked you first. Dr. Krishnan, you are director of transplantation at City of Hope, so how do you answer this lady’s question?

Dr. Krishnan:
Well, first of all, thank you. You both gave me a promotion. I’m actually not director of transplantation. I’m director of the myeloma program. Still, I guess a couple points. Number one is if you look at the CIB in terms of the (?) international bone marrow transplant registry really only 20 to 30 percent of patients in the United States who are eligible for transplant are referred for transplant, so it’s very underutilized. As Dr. Richter said, we now have trials using modern drugs comparing them to transplant, and transplant still seems to offer us longer remissions.

And then the third point is transplant has become safer so we know in that comparative trials, again, obviously patients selection. You’re going to stack the odds in your favor if you’re going to offer a therapy that you want a good outcome, that the risks now are equivalent to the initial induction RVD therapies for patients getting an autologous transplant. And so much so I can tell you at least at our center we’ve moved our transplant to the outpatient setting.

So when we started patients were in isolation, boy in the bubble kind of thing, and now we recognize most of the infections patients get are from their own body not from everyone bringing it in to them. There’s a lot to be said for, as Kristen said, exercise, walking, diet and trying to maintain some normalcy, so having all those things when you’re not in the hospital are much easier. So all those things tied together hopefully have made transplant much or accessible, safer and sort of less frightening to patients, too.

Jack Aiello:
And, Kristen, you probably get patients there at Arkansas asking why are you suggesting two transplant instead of you just a single transplant? How do you answer?

Kristen Carter:
What’s funny is you ask three transplanters what we think about transplant because we’re all for transplant and we’ve done, you know almost 12,000 transplants for myeloma. And we do do tandem transplants, and they have seen, like Dr. Richter said, the deeper the remission, we know the longer the progression‑free survival, and there have been clinical trials that show that tandem does lead to, I think, it’s a 15‑month progression‑free survival advantage.

However, tandem transplant is not for everyone for sure. I mean, we definitely have people that are in their 70s, late 70s, are we going to do a tandem transplant on that person? Probably not. If you have a 40‑year‑old then that’s where you’re thinking of tandem transplant and more aggressive therapies. And I will tell you we’re seeing patients younger and younger. The 30‑year‑olds that I see, come into our clinic it’s just heartbreaking. We usually think of myeloma in patients that are in 60s and 70s, and, you know, if you give those patients a 10‑year survival maybe that’s a success. But if you have a 40‑year or even a 30‑year‑old, 10 years is not a success.

So we’re trying to do what we can up front to give these patients the best long‑term progression‑free survival available. Yes, as we sit here today transplant today‑‑it may change tomorrow with newer therapies‑‑has shown the best benefit for these long‑term progression‑free survivals.

Jack Aiello:
We have patients in our support group and I know across the nation saying, well, should I consider trying to get one of these CAR‑T therapies instead of doing a transplant? Dr. Krishnan, let me ask you the question. Do you think one day that maybe CAR‑T might replace transplants? Or how do you answer patients that have that question?

Dr. Krishnan:
I don’t‑‑well, number one, I think that’s 15 steps forward. If you look at the progression‑free survival just from the Bluebird trial it was‑‑it’s not four years, which is what‑‑or three years even what you’d see. Again those are relapsed patients.

Jack Aiello:
Heavily pretreated, yeah.

Dr. Krishnan:
Exactly. We do know too is you first have to reduce the amount of myeloma in the body for CAR‑T to work well and also to reduce the toxicity of CAR‑T. So you can’t just take someone with newly diagnosed myeloma and give them CAR‑T cells.

What we are looking at is the trial that was going to open through the (?) VMD CPN is patients that have very, very high risk myeloma doing CAR‑T cells after an autologous transplant. So really in a way you’re trying to get the best of both worlds.

Jack Aiello:
And, Dr. Richter, you would probably agree with that?

Dr. Richter:
Absolutely. At the moment although CAR‑T technology is extremely exciting it is not FDA‑approved and as it’s on clinical trials spots are unfortunately very limited, so at the moment the standard of care is still to move towards an autologous transplant. Having an autologous transplant does not make you ineligible for many of the CAR‑T protocols.

The only type of transplant that limits options for CAR‑T is allogeneic stem cell transplant, makes you ineligible for many but not all of the CAR‑T protocols. But, again, the decision of which way to go now is going to change in the future and this is a conversation you should definitely have with your care team.

Jack Aiello:
Thank you. We need to start wrapping up, although I have a number of other questions I could ask you. And I do want to ask one question that was asked, and that was from Heather who asked the question about how‑‑can you discuss or how are any of the new treatments being used to treat amyloidosis that’s caused by myeloma? Dr. Krishnan, can you respond to that?

Dr. Krishnan:
I think we need to make a distinction because amyloidosis, what we call secondary amyloid that’s associated with myeloma and then there’s primary amyloidosis which tends to be much more of a different clinical symptoms, and those patients, quite frankly, often are sicker than myeloma patients because amyloid can involve the heart, the GI tract, kidneys and a lot of neuropathy. And certainly the heart, when amyloid involves the heart especially that can make patients quite fragile.

And so the drugs we use, we do use the myeloma drugs because amyloid is still a disorder from plasma cells, but we tend to use them at different doses. And, again, we monitor for different toxicities in that population. Having said that, you know, we’re very excited about daratumumab now and activity in amyloidosis. Again that’s primary amyloidosis.

But, as I say, amyloid is such a different bird for us. We have a director of amyloid here. It’s really grown into its own special niche. They have their own society too. I mean, we co‑mix, but again it tells you how unique that disease is.

Jack Aiello:
And, Dr. Richter, how do you treat secondary amyloid?

Dr. Richter:
Unfortunately, so far the drugs that we have for myeloma that we use in amyloidosis, they control the core problem which is the production of the light chains that tends to lead to amyloid but doesn’t get rid of the amyloid fibrils themselves. So we have patients that enter a hematologic remission where we get rid of the bad protein, but they still have significant organ dysfunction, either cardiac or renal most commonly from amyloidosis.

There are several drugs in clinical trials that are looking at targeting the amyloid fibrils themselves, and although it’s still somewhat controversial there’s some interesting data about doxycycline, which is an antibiotic a lot of us have used in the clinic, that there may be a component that doxycycline may destabilize some of the amyloid fibrils. Again, the data is still evolving, and we don’t know yet, unfortunately, how to treat many of these patients. Amyloid is one of those diseases which is often diagnosed after patients have had it for a very long time, and we often have a lot of ground to make up at diagnosis.

Jack Aiello:
Can I ask each of you to make closing remarks? The objective of this webinar was to provide insights to myeloma patients in terms of how to best move forward in getting the right treatment and cancer care for their myeloma. Dr. Krishnan?

Dr. Krishnan:
I guess I would bring it full cycle to echo what Dr. Richter said at the beginning. Myeloma is still is rare disease compared to breast cancer, lung cancer, so most community doctors don’t see a lot of myeloma. And we know from actually published articles now that the more myeloma patients you see the better the outcomes are for centers.

So we don’t expect everyone to travel to LA or the Bay Area. So it could be 20 miles, but it could take two hours, so we don’t have that expectation you’re going to come in every week to see a myeloma center, but at least have that conversation early in the course of diagnosis and at various stages along the way, if the myeloma comes back, for example. Again, good to have it at points where you’re thinking of changing therapy.

Jack Aiello:
Getting second opinions from myeloma experts like yourself to at least be part of your medical team and work with your community doctor is awfully important in my opinion.

Kristen, can you offer your summary comments?

Kristen Carter:
I think both Dr. Krishnan and Dr. Richter are absolutely correct. Get to an academic center I think is important if you have the means. Also be your own patient advocate. I do think that the more well informed you are the better. And also the big thing that I see a lot is we will see these new trials come out, and, oh, this is so exciting, but we don’t have long‑term follow‑up for these new treatments, and we’re going to try the tried and true with the long‑term follow‑up success in the treatment available. So getting to an academic center, getting the treatment that they recommend and being your own patient advocate I think are the biggest takeaways to our patients.

Jack Aiello:
And, Dr. Richter, you have about 30 seconds.

Dr. Richter:
So, to me, the biggest thing is don’t be quiet. I see a lot of patients being stoic. You don’t get extra points for being in pain, not sleeping at night, getting neuropathy. Our entire care team, our whole purpose is to help in any way that we can, and if we don’t know some of the symptoms are going on we can’t treat them, so I would rather hear 10 symptoms that are not worrisome signs than not hear one that is.

So please encourage you to reach out to your nurses, PA s, doctors, the whole care team especially when you’re in the visits. It’s all about you. Please speak up if you have any problems at all because we have a lot of ways to deal with them.

Jack Aiello:
Thank you all for the insights you provided for myeloma patients. My name is Jack Aiello, and I appreciate all that you do.


Please remember the opinions expressed on Patient Empowerment Network are not necessarily the views of our sponsors, contributors, partners or Patient Empowerment Network. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Myeloma Patient Cafe® June 2018 – Participating in a Clinical Trial

Host and Multiple Myeloma patient, Cheri Rineker, leads a panel of Multiple Myeloma patients who have all participated in a clinical trial. The panel discusses what it’s like to join a clinical trial, how they got into a clinical trial, and what it takes to be in a clinical trial.


Transcript:

Cherie Rineker:

My name is Cherie Rineker, and I will be your host today.  Today we will be discussing what it’s like to join a trial, how we got in one, and what it takes to be part of a trial.  We have a lot to cover, and we have four guests that were kind enough to take time out of their busy days to share their experiences with us.  So having said that, I would like to start by asking you, Brian, where are you from, when were you diagnosed and what were some of the trials you were part of?

Brian Helstein:

I am from Southern California I’m one of the five people you will ever meet who was actually born in Hollywood.  I was formally diagnosed in February 2011.  In retrospect, symptomatic throughout most of 2010, but that’s with 20/20 hindsight.

At the time that I was considering undergoing a stem cell transplant I was offered one clinical trial through City of Hope which formally is identified as BNTCTN0702.  It was a three‑arm stem cell transplant trial where one arm would get two stem cell transplants, one arm would get a single stem cell transplant and go directly to maintenance, and a third arm would get the stem cell transplant, go through consolidation therapy and then go to maintenance.  And I was in that third arm at the time that that was offered to me‑‑I work in higher ed, and at the time that that was offered to me I said, certainly.  If I’m going to be sick somebody besides me needs to learn from this.  So I signed up for that.

And when I was going through the consolidation therapy they asked me if I wanted to participate in another trial that was‑‑that was attempting to monitor my maintenance and so that they wanted me on a specific maintenance regimen, and I signed up for that one.  So I was on maintenance from that from spring of 2012 through September of 2017.

Cherie Rineker:

Excellent.  Thank you, Brian.  What about you Matt?  Where are you from and what year were you diagnosed?  What studies have you participated in?

Matt William:

Hi, Cherie.  I grew up in Santa Cruz, California, but I was diagnosed in 2011 in Anchorage, Alaska, and then eventually moved to here in Kauai.  I live in Kauai now.

And I have been in four different trials.  The first one I don’t remember.  It was pretty minor, just a different combination of drugs that were common drugs.  And then my second one was my cells with radioactive antibody isotope injection and then followed by an allotransplant.  And I had a stem cell transplant before that, so that was my second one within a year.  And then I wasn’t given much time left, and I was sent to City of Hope for a study on an agent to help with deletion 17p, and that was followed‑‑let me look at my notes here.  I dasanutlin and (?) ixazomib with dexamethasone, and that helped bridge the gap.  I wouldn’t have made it to my CAR‑T trial without that.  And then eventually just recently finished up a CAR‑T cell trial in Seattle.

Cherie Rineker:

Excellent.  Thank you.  Eric, can you tell us where you’re from?

Eric Wolf:

Yeah, thank you.  I’m from Southern California also, grew up in Pasadena, California.  Was diagnosed in 2012 with a vertebra collapse.  That’s how my disease presented.  I have been on four different trials.  Post transplant in 2012, I was part of a shingles vaccine trial.  Don’t know if I got the placebo or the vaccine.  It was one of those types of trials.

Since then I was on a drug trial that did not work.  And then most recently I am currently on a trial.  It’s an antibody‑drug conjugate trial through City of Hope, and as part of that I did a gene sequencing trial.  So four different trials, and currently on an antibody‑drug conjugate trial.

Cherie Rineker:

Excellent.  Thank you.  Thank you.  And last but not least, Barb, could you tell us a little about yourself?

Barb Hansen:

Hi.  Thanks, Cherie.  This is a great opportunity, I think.  I am from Morrison, Colorado, which is a small town outside of Denver.  I was diagnose in 2006, December 6.  This was after breaking a rib back in March, so it took quite a while to get my diagnosis.  And I had been in a clinical trial, the CAL GB100104, which was the trial that helped set the protocol for stem cell transplants now.  That happened back in October of 2007.

And my doctor had talked about a stem cell transplant for me, and then later I found out, like two weeks later I found out it was going to be part of this trial and didn’t want to participate.  And when they said it was going to be a 15‑year trial I said, yeah, sign me up.  So I had the stem cell transplant October of (?) 2017, and then was given the maintenance drug the following February, and then took that maintenance drug for five years and have been in remission ever since then.

Cherie Rineker:

Excellent.

Barb Hansen:

Thank you.

Cherie Rineker:

Thank you, Barb and everybody.  Well, many of you know me.  I was diagnosed in November of 2012 after six months of much back pain and severe fatigue and was diagnosed with multiple myeloma while in the ICU.  And they found three tumors on my spine.  One had gone into my spinal cord, and they were surprised I was still standing.  And then I did nine induction therapies which only brought my counts down to 80 percent and my bone marrow.

But they went ahead and did a stem cell transplant followed by another, and then I went through a total of 13 lines of therapy.  And when the 13th wasn’t successful, relapsed again in December of last year, I told my oncologist that‑‑who wants to put me on four chemo drugs instead of the usually three, I said I want to tryout the CAR‑T.

So very, very sick, I started making the trips to Sarah Cannon, which is about a 14‑hour drive from our house.  And was accepted into the trial and received my CAR‑Ts on the 12th of March, and a few weeks later I showed no myeloma at all in my blood and then also none on the PET scan and none in my bone marrow.  So what 13 lines of treatment were not able to do over 65 months, CAR‑T basically gave me my life back within weeks.  And I’ve become a big proponent of trials ever since.

So what’s a myeloma clinical trial like?  The experiences are probably as vast as the amount of patients that are in it.  Matt, allow me to start with you.  What made you decide to join a trial, and how did your experiences compare to the actual expectations that you had?

Matt William:

Gosh, with my most recent trial I was at the end of the road.  It was the last house on the block, so I was eager to get in and did everything I could to do that.  I was turned down all over the place.  I was on the list in several places including China, and I was told that I only had a couple of months to live and that I probably wouldn’t‑‑there was a‑‑I had an allotransplant so I was being turned down because of that.

And then Seattle Cancer Care Alliance came up with a study that I heard about just through word of mouth.  Although I was a patient there I was not aware of it.  Somebody told me on social media about it, and I got my name on the list.  And my doctor told me I wouldn’t make it, that it wasn’t going to open in time for me, and he was kind enough on his own time to do some searching for me and found the City of Hope trial that targeted my 17p deletion problem.

And so I was willing and eager and trying to get in everywhere and was continually disappointed being turned down, and I thought it was going to happen again there for sure.  And I was lucky, there was a doctor, the Dr. Green there was‑‑opened it up a little bit.  There was many reasons for him to exclude me, but somehow I just squeaked in there, and my story is very similar to yours.  Shortly after, in 28 days, I had no sign of myeloma in my marrow or my blood.

There was a little bit left in my PET scan, but I just got back last week from Seattle and there’s zero sign of myeloma now after my 90‑day test.  So I’m just so grateful for clinical trials and to be able to finally get into the CAR‑T trial.

Cherie Rineker:

Yes, Matt.  We’ve gone this journey together, and I’m so, so thrilled to hear about your results from last week.  Brian, you can you tell us about why you decided to join the trial?

Brian Helstein:

Seriously, I really have spent my entire working life‑‑I’m getting ready to retire, and I’ve spent 50 years in higher ed.  I really, really had no clue at the time of diagnosis life expectancy or anything along those lines, and I figured, you know, that I was going to learn how to deal with this, that or the other infirmity the treatment was going to cause, and other people needed to know how to do that and do it better.  They needed to learn from my experience.  It wasn’t‑‑it just wasn’t something I was prepared to take with me.

And I must say I’m somewhat rebellious about things.  I have a dermatologist at this point who does not like me to go running out in the sunlight without a hat, without a long‑sleeved shirt.  If he had his way, I would also have ski mask and tights on.  No exposure to sunlight, and I have been known to go for a long run in my running shorts and shoes.

This was not going into a clinical trial where I was going to be told you’re going to take these drugs on this day, you’re going to show up at such and such a time on that day.  I knew that I was going to have to be disciplined, and I was going to have to follow exactly the protocol of the trial if it was going to be of any benefit to other people.  So I made that compromise.  I’ll go running without a shirt once a month or whatever, and I will be at the doctor’s office at, you know, 10:15 if that’s the time I’ve been summoned for.

I don’t know any other way to put it.  It was a matter of being disciplined so I could share so that others could benefit from this.

Cherie Rineker:

Very good reason.  Very good reason, Brian.  Thank you for sharing.  Eric, why did you decide to join a trial?

Eric Wolf:

Yeah, I think in some respects they are easy, right?  So the one that I did having to do with‑‑what is it, the shingles trial, it was there, it was offered to me.  It didn’t require much of me but calling in and reporting once a month on what‑‑if I experienced anything.  It was really easy, and so in some sense there’s those types of clinical trials that are just sort of tag‑ones to what we’re already doing.  Same thing with the extra marrow that was collected to do my gene sequencing.  That was not really a big deal.

But like yourself and Matt, there are other clinical trials that we seek out on our own part because we need those to manage our disease, and that was the case with the other two trials I’ve been on.  You know, the one I’m on now is because, as much as we don’t like to admit it, our options are limited, and so this is a trial that’s there and available and the timing lines up, and so you do it.

Cherie Rineker:

Excellent.  So anybody else besides Matt and I has had to travel long distances for their trials?  And then Barb, I’d like to ask you the same question as well, so maybe you can answer that.

Barb Hansen:

Well, I certainly didn’t have to travel.  I’m right here in the Denver area.  I think what really helped me make the decision, and my family helped also, is that I really felt confident with this new doctor I was seeing.  I had seen someone for five months, a hematologist‑oncologist who was not a specialist in multiple myeloma, and then after attending a stem cell seminar and this doc answering five questions in like five minutes I just felt very confident with him.  So I started, I transferred my records and just felt very confident with my healthcare team, and it was his recommendation.

Also, I have kind of a science background and my son does cancer research, and I know that the new science isn’t going to happen without clinical trials.  I’m a real advocate for clinical trials and did‑‑I volunteered for Colorado Cancer Research Program, which coordinates all the trials.  So it’s been a rewarding experience.

Cherie Rineker:

Thank you, Barb.  I see you wrote an article at one point about to trial or not to trial, that’s the question.  And I was very surprised in my research how few people actually participate, grownups versus children.  And I found it wasn’t just the grownups fault, or not wanting to do it, but it’s actually not as easy as Matt and I found with the CAR‑T, and maybe some of you as well, to get into a trial because there are so many requirements in order to get into that.

Did any of you have that issue or an issue of travel, money, or health that made getting into a trial challenging?  Matt, start with you.  I know you had to travel very far.

Matt William:

Yes.  When was I was diagnosed I was in Alaska.  There wasn’t really a myeloma specialist, and we got online right away and found the Seattle Cancer Care Alliance, and we’re really happy there and found a great doctor there.  But we had‑‑for my first transplant we relocated down there for 10 months.  Luckily, they had a little school and some‑‑for our kids and some housing.  But it was expensive.  It wasn’t free.  They had a social worker that helped us a lot, and we did some fund‑raising.  Lots of really great friends that helped out and just really streamlined our finances and our bills and sold a lot of stuff to fund it.

And, yeah, it was very expensive, and yeah, over time it’s really taken a toll on all of our savings and investments and all of that stuff.  But it’s worth it, you know.  Money can be remade and we can live simpler.  And so it was very much worth it.  If I wasn’t flexible with that type of stuff I wouldn’t be alive, so I had to do it.  And I would go to any lengths to find help and an answer to my problem.

Cherie Rineker:

Right.  Right.  Thank you.  Thank you.  I totally understand what you mean, having a young child in my family myself.  We have four beautiful daughters.  So thank you.  We’re glad you chose to hang in there.

Can anyone tell me about how they found out about the trial they joined?  Eric, can we start with you?  Today, online offers a tremendous amount of resources.  Which one, if any, did you use, and how do you stay informed about the latest trials?

Eric Wolf:

A little bit like Matt.  I made the decision to move to an area where I knew there would be good support when retired from the military, so I moved up into the LA area near City of Hope knowing that they had fantastic care and availability of trials and other things like that.  So I get most of my information through them.

Also, of course, read blogs and read information from the IMF and other things that are coming out.  And that all leads to trying to make the best decision.  So in the case of my current trial it was a matter of talking with my doctor and look at actually three different trials that were available, any of which could have been a good fit for me.

And then it’s a matter of which one‑‑then it’s kind of a matter of timing, right?  It’s just are you sick enough, ironically, to meet all the qualifications for this or that particular trial.  And so that’s kind of how I made the decision in concert with my doctor looking at the options available.

Cherie Rineker:

Right.  Thank you.  Thank you for sharing that.  Brian, what about you?

Brian Helstein:

I was on the fence about having a stem cell transplant, not on the fence about joining a trial.  And the‑‑my caregiver, my darling wife, basically pushed me off the fence and said, you will have this.  I’ve heard your doctor say that you will have a much better opportunity for long‑term survival if you go through with this.

So at City of Hope, as I was being interviewed and prepped for the stem cell transplant, they gave me a list of options which included amongst other things the participation in a trial.  And I was impressed with what they were looking at.  I was impressed with what the options were.  Unlike Eric’s comment about the shingles trial where he might have gotten a placebo, there was no placebo involved here.  There was standard of care treatment, there was standard of care plus and standard of care plus plus, which was what was going to be offered.

So it was at that point a fairly easy decision saying, okay, I have made this commitment to go ahead with the transplant, so let’s see about going ahead with the trial and, as I say, being disciplined enough for follow directions.  But it wasn’t‑‑there was no hesitation about it.  It was not something where there was a specific start date, again, like Eric, where I needed to fit in or I needed to be so sick or so healthy.  It was very much you’re going to do a stem cell transplant, and then beyond that we’re going to put you into one of these three arms and we will monitor you from that point.

Cherie Rineker:

Right.  Right.  Thank you, Brian.  Barb, I’m not sure.  Did I already asked you this question, or do you have anything to add?

Barb Hansen:

Well, my stem cell transplant was part of a clinical trial, and when my doctor said to me with a stem cell transplant you might be able to take a drug holiday.  That was appealing to me, so that combined, you know, being part of the clinical trial then was a bit of a driving force.  I hated being on dexamethasone.  I did not sleep well for, well, a long time.

And then, you know, I just can’t encourage people enough to find a multiple myeloma specialist who really knows this complicated disease and treats people individually and just knows what’s best for the patient.  And I was very glad that I joined the clinical trial, and I certainly advocate for them whenever I get a chance to.  Thank you.

Cherie Rineker:

Excellent.  So what advice do any of you‑‑do we all have for those myeloma patients that feel overwhelmed now and through the entire process, what they can do when they feel they’re running out of time or options?  What is it that you would like to tell them?  What has helped you on the internet?  I know Brian at SparkCure really helped me to find the trial that I got into, BB2121, a Celgene CAR‑T trial that ended up giving me my life back.  Just like Matt, I only had a couple months left.  What would you tell others?  Eric, do you maybe care to answer that first?

Eric Wolf:

Yeah.  So this disease of course is real science‑e, and we’re always thinking one step ahead, what’s the next thing, what’s the next thing?  So part of that calculation should be clinical trials, and so you have to keep up with what’s going on with those.  There’s a lot of information out there in different blogs on Cancer Care Network, on Sparks, and those types of things.

Of course, if you’re fortunate enough to be associated with a Cancer Research Center like City of Hope, then that’s a great opportunity.  They have posters throughout the campus about different trials that are going on, and of course I can reach out to my doctor at any time and look at those things.  But I think that all goes into our calculation of how we’re going to manage our disease and what’s the next step for us.

It’s‑‑different people have‑‑and I’ve ebbed and flowed over the years about how much I want to be involved, and sometimes you just want to take a break.  You just want to just do whatever my doctor says, and I don’t want to think about this disease for a while.  I just want a couple of months off.  We have that option, but it always comes back and comes to the forefront.

So I think as‑‑the advice is to look ahead, think ahead, keep up with what’s out there, but don’t let it overwhelm you.  At some point you have to live your life and just not‑‑you can’t live for the disease, live every day thinking about the disease.

Cherie Rineker:

Right.  I think we all agree with that, Eric.  Matt, what would be any of the advice you would give?

Matt William:

Just going back to how I accessed some of the trials.  It started with me, just through my doctors.  I had three trials that were just recommended by my specialist, and then it led to‑‑once I got to the CAR‑T cell therapy it was a little harder to find.  And I started with the Leukemia and Lymphoma Society, and they were very helpful, and they actually taught me how to do a little searching myself.

And then I got into some Facebook chat room type stuff where I was getting more information, and that’s where I met you.  And you recommended SparkCure, so it kind of led to that.  And I was doing my own stuff, and I met couple other people that kind of were like Brian, helping out.

But ironically, it turned out to be, you know, I like sending little messages, private messages to people and making acquaintances, and I became friends with this guy, Grant, from South Africa.  And he’s the one who told me about the trial that I finally got into, and it was at the very hospital that I was at, but I was unaware of it.  And he told me so early I got my name in there.

So I think, leading up to your question, persistence, you know, and don’t give up.  And just take it one day at a time.  And I like the advice of don’t get overwhelmed with it and just keep a good attitude.  And then ultimately be flexible.  There’s a lot of help out there and I’m continuing to be helped with my air fare and stuff like that, I forgot to mention before.

And so there’s a lot of‑‑don’t get overwhelmed by the money.  There’s some help out there for that, too.  And just one day at time and don’t give up and just try to reach out to other people and get‑‑the personal information, one patient to another online probably ended up being the most beneficial to me.

Cherie Rineker:

Thank you, Matt.  And I completely agree with you.  I’m pretty busy on Facebook myself, and I had people pushing me when my body and my mind could not handle any more and I wanted to give up.  And there was one lady in particular who just kept nagging me about it, and just to quiet her up I started following her advice and stuff.  And then one thing led to another, and I’m sitting here today because of these personal experiences.

And just the other day there was a gentleman who just basically said, I’m at the end of the line, can’t do no more, and I’ve been working really hard today and yesterday to write letters and talk to my doctors and to try and get him, because I know when we’re that sick sometimes it’s really hard for us to do it ourselves.  So absolutely there’s support you can get online‑‑

Matt William:

One more thing, Cherie.  I forgot to mention, it’s so important, Patient Power has been amazing with their videos and these interviews, and it really helped get me pointed in the right direction as well and some hope about CAR‑T cell and a little extra information and got me excited and added some hope to my journey.

Cherie Rineker:

Absolutely.  Absolutely.  We owe a lot to Patient Power.  What about you, Barb?

Barb Hansen:

I’m very pro clinical trials, and I do have a couple of venues where I’m able to encourage people to check out that option.  One is our multiple myeloma journey partner program, and because I tell my story there having had a stem cell transplant I also include the clinical the trial stories.  And so when I’m doing that I encourage people to check out the possibility, the option of going through a clinical trial.  And here in the United States we really need to encourage people to do that.

And then the other avenue I have is through the Leukemia and Lymphoma Society first connection program.  The Patti Robinson first connection program where I get calls from the society asking me if I’m available to talk to a person who is in another part of the country or here in Colorado.  And so it’s a person who just wants a call.  They’re either newly diagnosed or they’re going to go through a stem cell transplant or they’re considering a clinical trial, and so we chat and talk and I, you know, point out what I’ve been through and what has worked for me.

Always encourage them to talk to their doctor, and I don’t give medical advice by any means, and it’s encouraging.  Very rewarding to talk to people like that.

Cherie Rineker:

Thank you, Barb.  Yeah, you just taught me about two things I’d never heard of, so that is wonderful.  And I really think when patients talk to each other we can tell other things that the pretty pamphlets that are sent along with our Revlimids or our Velcades doesn’t always talk about all the things that we really experience.  So it’s wonderful to hear a person who’s been there explain things to us.  You, Brian?

Brian Helstein:

What I would tell somebody, first of all, is take a deep breath.  It ain’t going to kill you today.  And then the second thing, as we move forward with this, after you’ve had that deep breath, start evaluating what’s important to you, how hard are you prepared to fight this.  This goes to what Matt was talking about, the kind of thing that Eric was talking about.  What drives you?  What motivates you to keep going, and to keep those things in your mind?  It will make a tremendous difference in how you approach your various treatment options, the people you work with.

Barb was just talking about talking with, working with her doctors, and one of the things that I think all of us will agree on is you have to feel comfortable with your doctor, and if you don’t, it’s time to find a different doctor, a different treatment facility, whatever.  You need to be comfortable as you’re working with these people.

And, again, I think it was you, Eric, said sometimes you want to turn your mind off and stop worrying about this thing for a little bit.  I find that that’s fairly easy to do as long as I keep in front of me why I’m prepared to keep fighting, to keep going.  At that point, having made that decision, having put that focus on, it makes it easier for me not to focus on being sick.  And that’s something I would tell somebody, is why are you here?  What do you want to do with the time you’ve got left?

None of us are getting out of here alive.  Seriously.  All a diagnosis of multiple myeloma does is say, okay, you’ve got something that can kill you, and now you can put a name on it.  That’s bringing home in a very visceral way something that we probably intellectually knew but were not emotionally prepared to deal with.  And so focusing in on what’s important becomes very important part of moving forward.

Cherie Rineker:

Having a purpose in life is so very important.  I always tell people that even when you have cancer you can beat this disease if you keep in your mind you can, like you said, know what’s important, why you’re fighting to stay here, and then just do what you have to do.  Absolutely.

I would like to ask one final question of all you, all my guests here today.  How is life treating you today?  How are you feeling?  How are the drugs doing?  How are the side effects?  How are you sleeping?  And what is motivating you?  I know, for you, Brian, it’s your running, correct?

Brian Helstein:

Well, I’m working on the retirement actually.  Running is just like you brush your teeth in the morning.  That’s just a normal activity that I do.  Yeah, it’s just something that is part of my daily life, but, no.

I’ve been running a program for the University of Southern California, for example, that enables access to all of our licensed electronic resources, books, journals, databases, for the last 13, 14 years.  And I’m trying to clean up my sloppy programming, document my work, and train the people who will be my successors.  So that’s my real daily operational motivation at this point.

I’m not doing anything other than looking forward to some silly things in retirement.  I want to be on the Champs‑Élysées one day when the Tour de France ends.  Okay?  It always ends on the Champs‑Élysées.  That’s one of my goals in life.  It’s not a major driving force.  I have five adult children.  I would love to see some grandchildren.  That’s something you can’t control.

Cherie Rineker:

Right.  Eric, what about you?  How are you doing these days?  You look really healthy.  All of you, by the way.  Looks like we’ve taken on the beast and we’re winning.

Eric Wolf:

Like Brian, I’m trying to retire again.  After one retirement from the military I’m trying to retire again and just kind of working on some other things.  The clinical trial I’m on now, it’s been very rough.  It’s pushed my blood counts down, so I’ve had trouble with bruising, had trouble with shortness of breath and just getting enough energy.  So working through that, and who knows where this will lead, maybe CAR‑T or something else.

But, ultimately, the things that I like to do, I like to ride my motorcycle.  I like to backpack and camp, although the backpacking has been kind of cut short these days.  Just have done a lot of that over the years.  And looking forward to spending more time with the grandbaby.  We have a two‑year‑old granddaughter now, so enjoying that time.  I will say though, ultimately, my hope is in eternity.  And that’s from my Christian faith.  I’m enjoying life.  I’m enjoying fighting the disease, I actually am, and I’m positive about that.  But, like Brian mentioned, we’re all‑‑we’re all going to die eventually, so my hope is ultimately in eternity and the joy of that.  So that’s kind of where I am.

Cherie Rineker:

Thank you for sharing.  Very nice.  How about you, Matt?  Girls keeping you busy?

Matt William:

Gosh, yes.  I have so much to live for.  And I just turned 50.  We didn’t think that was going to happen.  We’re expecting a grandchild in December, I didn’t think that was going to happen.  We just found out about that.  And, you know, I really like what you just said.  You know, cancer hasn’t been all that bad to us.  It’s been‑‑we’ve had our share of struggles.  But I’ll tell you what.  Our quality of life has actually gotten better.  It’s brought us closer together, closer to our god, and we just really don’t take things for granted so much anymore.

And there’s a lot more to look forward to in the future.  I’m an avid surfer, or was.  I haven’t been out in the surf in over a year, and‑‑because of some phone problems, but I’m thinking that’s not too far away, that I’ll be able to start slowly back at that.  And just continuing to raise these kids and enjoying life, you know.  And just one day at a time, not worrying about what’s coming next all the time, you know.  I feel like I have that little break right now.

Cherie Rineker:

Absolutely.  Enjoy it, enjoy it, my friend.  Thank you.  What about you, Barb.  What are your aspirations?

Barb Hansen:

Well, I’m just so thankful to be here.  When I started Googling back in 2006 and even talking to my dear doctor, Dr. Jeff (?) Mathes at Colorado Blood Cancer Institute, Richards Rocky Mountain Cancer Center, you know, back then the average life expectancy was three, four years, and now it’s upward of 10, and I’ve beat that so a far.  So I am just so thankful to my healthcare team and just grateful to be here enjoying my two grandchildren, who I did not think I would have either.  Forest and Estelle, they are the joy of our lives.  Really enjoy them.

I golf a little, nine holes.  I do get tired because.  Of all of back issues, the bone fractures that I had, I do tire.  I love doing the volunteer work that has come my way, and now there’s more work they’ve asked me to do primarily through our church.  And I’m going to have to start saying no.  You know, I’m just taking a break and really enjoying life.

Tomorrow I’m going to Boise to talk to a support group about my journey, and I look forward to those times.  It’s really neat getting to be with other people who have this crazy disease and just showing them I’m still here.  I went through a stem cell transplant, a clinical trial, and it’s encouraging to help give other people‑‑help them with their journey and be hopeful.  Faith, family, and just enjoying the outdoors, creation.  That’s what it’s all about.  Thank you.

Cherie Rineker:

Yes, thank you all.  For me too it’s my family.  It’s also I became a huge advocate just for myeloma patients.  Because it took so long for them to diagnose me I always thought if my story and my symptoms are out there and somebody is seeing a YouTube of mine and that makes them go to a doctor and find out and say, hey, I want an Kappa light chain test or a Bence Jones 24‑hour urine test or anything.

Or even a doctor that would become more aware because we are putting ourselves out there with our stories, and if even just one person won’t be diagnosed with stage III but maybe as stage I and have a better chance of long‑term survival then I’m extremely grateful for putting myself out there.

So besides enjoying my family I really helping Patient Power and anybody else who comes knocking on my door, whether it’s through Facebook or companies giving talks, giving interviews, anything like that.

So I want to thank you panel for sharing your stories, giving your advice with us today.  As we all know, myeloma is a very difficult, painful disease to control, and I know without online support and things like Patient Cafe and SparkCure it would be a lot harder for me and I likely wouldn’t even be here today.

Thanks also to our listeners for tuning in.  We hope we were able to answer some of your questions about trials and how to get into them.  Reach out to Patient Power with any questions, please.  And we hope you’ll tune soon in again for our next show.


Please remember the opinions expressed on Patient Empowerment Network are not necessarily the views of our sponsors, contributors, partners or Patient Empowerment Network. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

 

Living With Two Cancers

My story with cancer started in 2008 when I was diagnosed with Multiple Myeloma. I was fortunate to have a primary care physician who noted abnormalities in routine blood work and sent me to a hematologist oncologist. At the time of diagnosis I was at the MGUS stage, precursor to active Myeloma, and was monitored every 6 weeks. During that time I switched to a Myeloma specialist in the health system where I was employed as a PT. I also hit the internet to learn more about this cancer that I had never heard of. BIG MISTAKE! The published survival rates at the time were 2 years. I wasn’t ready to hear that so I stopped reading.

Over the next year I pretty much refused to own the fact that I had a cancer diagnosis. I wasn’t being treated, might never be treated and felt ok except for fatigue. That all came to a screeching halt one day when I had extreme pain in my left arm and suddenly couldn’t lift my arm. I went to the ER and was diagnosed with a pathological fracture of my left humerus, upper arm. I saw my specialist the next day and began treatment immediately since I now officially had active Myeloma.

I responded well to treatment and went on to have an autologous stem cell transplant (ASCT) 9 months later. This led to a complete response and almost 3 years with no treatment until I relapsed. I began treatment again with the same drugs that had worked so well before and again had a good response. I continued with this for almost 4 more years until one day in October 2016 all hell broke loose. I was in my oncologist’s office for a regular appointment waiting for him to come into the examining room when I crashed. I was rushed across the street to the ER where I was admitted. A few days later, after many tests, I was diagnosed with Acute Lymphoblastic Leukemia, ALL.

I spent the next month in the hospital receiving induction chemotherapy for the ALL and the next 6 months for consolidation therapy. During those months of treatment for the ALL I relapsed again for the Myeloma. After I completed my ALL treatment, that’s now in remission, and recovered from that chemo, I began treatment with one of the monoclonal antibodies for the Myeloma. Now, 8 months later, I feel about the best I have in years and my blood levels are all in the normal range.

Although I’ve gone through a lot, especially since being diagnosed with the ALL, I continue to enjoy and live my life. I worked 6 more years after my diagnosis with Myeloma. I specialized in treating people with cancer as a PT. My cancer diagnosis brought me closer to my patients since they knew that I understood what they were going through. I continued to travel to Europe to teach, attend conferences and for pleasure. After my retirement I  have also been volunteering for the American Cancer Society and been very active as a board member and program chair of my local Myeloma support group.

Encouraging others who have been diagnosed with cancer has been a mission of mine for many years. Now, as a person with two blood cancers, I find that that helps others, but also me. With the treatments that are now available to us, we often can live fairly normal and long lives. Who would have thought that I would still be here when I was diagnosed 10 years ago? I attribute that to the wonderful medical care I have received from my oncologist and his team, the research that has led to more effective treatments and to the support of my friends and family. But, most of all, is my own self education about my cancers and my relationship with my oncologist. I believe that being an active partner in my care has been extremely important. I look forward to continuing to enjoy those things in life that are important to me.

Nancy Stewart
Multiple Myeloma 2008
Acute Lymphoblastic Leukemia 2016

Understanding The Myeloma Genome and What It Means For Patients

Understanding The Myeloma Genome and What It Means For Patients from Patient Empowerment Network on Vimeo.

Dr. Gareth Morgan, Director of the UAMS Myeloma Institute, discusses new oncogenes in myeloma and importance of testing at the time of myeloma diagnosis to set a treatment plan at the American Society of Hematology (ASH) Conference 2017 in Atlanta.

ASH 2017 Roundtable: Multiple Myeloma Research News and Updates From an Expert Panel

ASH 2017 Roundtable: Multiple Myeloma Research News and Updates From an Expert Panel from Patient Empowerment Network on Vimeo.

At the 2017 America Society of Hematology (ASH) annual meeting, a roundtable of myeloma experts share breaking news and the expansion of the treatment armamentarium in and implications for different disease status. The panel includes:

  • Dr. Carol Ann Huff of Johns Hopkins University School of Medicine
  • Dr. Sagar Lonial of Emory University School of Medicine
  • Dr. Suzanne Lentzsch fof New York Presbyterian Hospital/Columbia University Medical Center
  • Jenny Ahlstrom, President and Founder of Myeloma Crowd

Living Well With Multiple Myeloma – How to Maintain Emotional Equilibrium

How to Maintain Emotional Equilibrium?

Living Well With Myeloma: How to Maintain Emotional Equilibrium from Patient Empowerment Network on Vimeo.

How do you maintain emotional equilibrium when living with myeloma? Can meditation be a tool to reduce watch-and-wait stress? Can meditation be useful to a care partner? Lori Puente, of California, who serves as a care partner to her husband Dave Puente, a multiple myeloma patient, attributes meditation with helping her cope and maintain stability. Watch as Lori discusses why meditation is “vital” to making her an effective care partner. We will also hear from Danny Parker, who is living with myeloma, on how he uses meditation as a coping tool.

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