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Is It Possible to Achieve Health Equity in Multiple Myeloma?

Is It Possible to Achieve Health Equity in Multiple Myeloma? from Patient Empowerment Network on Vimeo.

How can health equity be achieved for underserved communities in multiple myeloma patient care? Watch as a panel of myeloma experts explains.

See More From the Diverse Partners in Your Myeloma Care Program


Transcript:

Rebecca Law:

I want to ask each of you to answer a question. So how can we achieve health equity in the care of multiple myeloma patients sooner rather than later?

Diahanna Vallentine:

I think we all appreciate the fact that the African American or underserved communities do not have enough people that are either willing or know that we need to go into those communities the way they are, meet the people the way they are, so that we can provide them with education, with resources, that are available. I think that is one of the first steps. And fortunately, or unfortunately, with the racial problems we’re having in our country right now, a lot of governors and mayors are opening up opportunities that we got to get into the communities. And I think this might be a great opportunity for the myeloma community to perhaps step up and say we would like to be presented or represented in the community when there are funds and when the interest is really high. I think that if we could establish a foothold that way, then we can just go on and work toward lessening that gap and disparities in the undeserved communities.

Dr. Sikander Ailawadhi:

Diahanna, that was really nicely put. I think what I can add to that is that we basically are already seeing a lot more discussion, a lot more focus coming up to this topic of racial disparity in multiple myeloma at different levels. So, what we need to do is continue to build upon that momentum, continue to build the relationships so that there is actually a combined force from various aspects. I would love to do telehealth going forward, but like Dr. Usmani brought up, if there is not enough reimbursement or leadership or legislation to support all of that, then our wants and needs may not be served fully. So I think developing those relationships, developing those partnerships and moving forward as we’re gaining momentum to address this particular question, this particular issue is extremely important. And I feel it is more hopeful and exciting in the future as compared to where we’ve come from.

Jenny Ahlstrom:

I would just reiterate what Diahanna said. I think it’s in building the programs that are simple enough for everybody to understand and utilize that makes just the usability of them as available as possible, and then building that relationship in those communities where the needs are. I totally agree with what Diahanna’s saying, you need to take the programs to the people where they are and not to expect them to come to your programs.

Dr. Saad Usmani:

I agree with everything that has been said on this topic. And I have to say that this is going to be a two-way dialogue, a two-way partnership. That’s the only way that this can succeed moving forward. Racial disparities are an inherent part of our everyday life, whether it’s in healthcare, whether it’s in other interactions we have with each other, and there’s a lot of historic perspective and context to that. This is not going to be a quick fix, this is going to be a long-term process. But it will have to be a partnership. And I’m talking on a broader level with myeloma care and better survival outcomes for all myeloma patients as the goal. But then looking at the overall societal goals as well, and trying to see how we can remove the inherent biases that everyone has and develop more fruitful productive relationships going forward in our respective geographic regions, but overall in our country as well. I think that’s the overarching theme and tone of the conversations we’re having in the country right now, and it certainly makes sense to do that for myeloma care as well.

Rebecca Law:

I want to take the time to thank each and every one of you for joining me today. On behalf of the Patient Empowerment Network and Diverse Health Hub, I am Rebecca Law. Thank you.

Myeloma Patient Cafe® – Genetic Testing from A Myeloma Patient Perspective

Myeloma Patient Cafe® – Genetic Testing from A Myeloma Patient Perspective from Patient Empowerment Network on Vimeo.

PEN Board Member, Jack Aiello, leads a myeloma patient panel discussion on genetic testing.

See More From The Myeloma Patient Cafe®


Transcript:

Jack:

Thanks for joining us for this Patient Empowerment Network Myeloma Patient Café. I’m Jack Aiello. I’ve been living with myeloma since 1995, and the world has changed a lot since then, including the introduction of genetic testing. That’s gonna be our topic of discussion today. I personally have never had genetic testing because it wasn’t done back then, so I’m looking forward to learning from you all, our patient panel, who have been diagnosed more recently than I have.

We’ll talk exactly what genetic testing is about, why you might get genetic testing done, and more, but we won’t really go into the science of it. Instead, this is gonna be a conversation among patients and caregivers and serve off as a jumping point to pique your interest in genetic testing, and have a discussion with your doctor about it if you desire.

Before we dive in, I wanna meet our panel, and I’m gonna ask each of you to introduce yourself. Tell me when you were diagnosed and the treatments you’ve gone through, and I will start with Doug.

Doug:

I’m Doug Kenaley. I was diagnosed in 2015, and my initial induction treatment is a little different than most. It was really only – it turned out to be Velcade and dex, and it got me down to the level where I could have a stem cell transplant, so then, I had an auto stem cell transplant. And then, about five months after that, I joined the elotuzumab maintenance trial, so I’ve been on elotuzumab and Revlimid since that point.

Jack:

Okay. Peggy, tell us about yourself.

Peggy Lindley:

My name is Peggy Lindley, and I was diagnosed with this lovely disease on Valentine’s Day of 2019, and it was just from my regular doctor. I go every year for my bloodwork, and he found something with me, and he found it only – he was aware of it because his mother was diagnosed a couple of years before that, so he’s the one that got me there because I would have never thought that. He asked me, “Do you have any bone pain or anything?” I said, “Well, just my back,” and that was it.

Anyways, he told me what I had. Then, I had a bone marrow biopsy, and that showed it. So, I went through five rounds of the Revlimid, dex, and Velcade, and then, in July of last year, I had my stem cell transplant, and I got my stem cells back on July 12th, and then, in November of last year, I started with the maintenance therapy, which is elotuzumab with Revlimid, so I do that every 28 days now. It was a little bit sooner, and you start one week – it was a progression, so now, I go once every 28 days.

Jack:

Got it. Nancy, tell us about yourself.

Nancy:

My name is Nancy Raimondi, and I was initially diagnosed in 2006 with smoldering multiple myeloma, and I was followed over the next nine years – I just continued to smolder until 2015. I developed a plasma cytoma, and that got biopsied, and it was 60 percent myeloma cells, so I needed treatment, so I started treatment July of 2015, I was diagnosed as high risk, so I was put in a clinical trial that included carfilzomib.

I had five rounds of chemo, did tandem stem cell transplants, and finished everything about seven and a half months later. Went in maintenance therapy the first year, was when Ninlaro was just released, so I was on Ninlaro, Revlimid, and dex for a year, and then, that got changed to daratumumab, Revlimid, and dex, and I was on that for another year. And then, in December 2017, I was MRD-negative, and I’ve not been on any treatment for myeloma since then.

Jack:

We’ll talk more about MRD-negative because that’s important to this discussion. George, how about yourself?

George:

My name is George Burrell. I was diagnosed in April of 2011. Ironically, the day that I was diagnosed was Easter Sunday and my wife and I’s anniversary. The – doctor told us we had multiple myeloma, and that we needed to get the numbers down so that he could put me in a stem cell transplant. I’ve had two of those, and I’m currently on a three-stage regimen of Cytoxan, dexamethasone, and Kyprolis, and it seems to be working quite well. My numbers are down, and have been holding pretty steady for about four or five months now, so we’re really happy.

Jack:

I thought it was interesting, Peggy, how George introduced the fact that “we” were diagnosed with myeloma, so maybe you can talk about what that experience was like for you.

Peg Burrell:

Well, definitely, it is a journey of “we,” and it was very frightening. I’d only heard the word “multiple myeloma” one time, with a colleague from work whose father was much older, who’d had multiple myeloma. And, George’s symptom was low iron anemia, and he’d been sent to an oncologist for iron infusions, but he never presented any other symptoms.

The doctor would say, “How are you?”, and he would say, “I’m fine,” and a year later, he was rushed to the emergency room with bleeding ulcers, and that’s when the oncologist just happened to be in the ER, and they thought George was having a heart attack, his blood count was so low, so they did a CT scan, and his oncologist came in and said, “This is multiple myeloma, I’m pretty sure.”

So, it was devastating, very frightening, but once we had a game plan – and, the one thing that George told me – he says, “Stop treating me like I’m dead,” and I was running over curbs taking him to appointments, and I was just a wreck. He was like, “You’re gonna kill me.” But, it is quite a journey, and I’m happy that I’ve been able to be there with him.

Jack:

Good. Since this Patient Café is to focus on genetic testing, let’s first get agreement what genetic testing is, which is basically looking at potential mutations in your myeloma cells. So, with that in mind, other than me, who’s never had genetic testing, has every patient here had genetic testing?

Doug:

Yup.

Peggy Lindley:

I have.

Jack:

Probably, right? Because you begin maybe with a FISH and cytogenetics testing. Doug, when you had that, did that yield anything interesting for you?

Doug:

Mine was a bit interesting because I went to a local oncologist, even though I was here in Houston, who’s close to me, and he had done a stint at MD Anderson. And so, he presented it to me when I was diagnosed – “You should have genetic testing right away.” So, I looked into it and thought it was a good idea, even though four years ago, even, there wasn’t a whole lot more – you have a test, but then what? That kind of thing.

This emphasizes why a lot of times, you wanna go to a specialty place like MD Anderson, because they did the bone marrow biopsy, and the tech put it in the wrong solution, and it destroyed the sample. But they were gonna hold off my induction. So, the doctor was pretty mad, but my first attempt was a failure. But then, he said, “Well, ultimately, you’ll probably go for a stem cell transplant. We’re gonna hook you up with MD Anderson right away, even during your induction.”

And, the first thing they do here is genetic testing. So, at that point, I got a genetic test – successful genetic test – and it was interesting because the results came in, I got the labs, and I’ve done science – I’m a scientist, I’m a geologist – but it’s just a lot of alphabets, and it’s very complicated. They’re worse in the summaries. It said, “No deletions found, no translocations found,” things like that, but you really couldn’t understand the rest of what was in there, and you kind of suspect there was something hidden in there.

But I sat down with the doctor here, and he went over it. It said basically, I was a standard-risk patient, and my FISH and cytogenetics showed that I had tetrasomies – so, four versions of the genes instead of the normal two. And, he says, “So, if you wanna look at it, that’s kind of a good news thing because we have drugs that target certain things, you have lots of those things to target – multiple copies of those things,” so that kind of relaxed me a little bit. I think it actually impacted my standard of care a little bit, and certainly, my quality of life, because I think the doctors relaxed a little bit too. They wanna get ahead of it if you’re high-risk.

Jack:

So, Peggy, when Doug mentions he got a report from FISH and cytogenetics, which is essentially gobbledygook –

Peggy Lindley:

It is.

Jack:

What did you do when you got that?

Peggy Lindley:

They told me right off the bat that I had myeloma, and that I had an aggressive form. So, I went through the rounds, and I responded very well to induction therapy.

Jack:

And, by “aggressive form” – how did they find that?

Peggy Lindley:

They just said it was aggressive. They didn’t really – they said the FISH test – it was still Greek to me. So, now, two years later, I’m understanding it more and more, but what it was was the translocation of the 4-14. So, I find that, and I ask doctors about that, and they say, “Yes, it is aggressive, it’s on the aggressive form, but it’s still on the intermediate side.” So, I’m not as concerned, but at least the doctors know, and they’re aware.

Jack:

And, “4-14” means that chromosome 4 and chromosome 14 pieces have been swapped places?

Peggy Lindley:

I don’t really understand that yet, but I’m learning. That’s good, very good. See? I’ve learned something more.

Jack:

There you go. And, Nancy, you’ve been at this for a little while, so you probably understand a little bit more about genetic testing. What’s the impact been on you?

Nancy:

Well, I’m getting there, but it is – it’s a lot of alphabet soup. It’s hard to retain. But, yeah, I had genetic testing done right away once the myeloma became active, and I also had aggressive highrisk. I had abnormal female karyotype, monosomy 13, the P-53, and a translocation – but I forget which one. And, what was interesting is in my initial appointment with my oncologist, he thought I was low-risk and talked about treatment, but when all the final results came back, turned out I was high-risk, which meant completely different treatment. So, that was a shocker.

Jack:

So, expand on that a bit. How did that high risk change your treatment?

Nancy:

He recommended a clinical trial instead of what they were gonna put me in, which included being treated with carfilzomib, which, at the time – this was 2015 – carfilzomib was being used mostly for people who had relapsed, and they were doing a clinical trial to see about treating patients up front with it that are high-risk. Why wait until they relapse? So, I had that in addition to the PACE cocktail with thalidomide, something else – there were seven different chemos.

Jack:

So, that was important that that high risk for you helped determine a change for the treatment, but you got into that clinical trial, and that was an effective trial, by the way, so that’s good.

Nancy:

Yes. It was definitely effective for me.

Jack:

Good. And, George, when you did – or, you did genetic testing, I presume, and did it show anything?

George:

Yes. The first time we did it was to run tests to get ready for the first stem cell transplant, and at that time, I didn’t understand the importance of all that. The oncologist that I was working with at the time did explain as much as he could, and in layman’s terms as best he could, but it still mostly went over my head. I was more thinking about the actual transplant itself than anything else. But, when I came to MD Anderson and got ready for – I was getting ready to try one of their clinical trials, they ran some more tests then, just to see how things had progressed through that number of years, and so, I’ve actually had partially two of them.

Jack:

So, I was gonna ask – have any of you had subsequent genetic testing where results have changed after your treatment for myeloma? You’re nodding your head, Nancy.

Nancy:

Yeah. Over a year ago now, I had my genetics repeated, and all the abnormal stuff went away, so that was pretty exciting, because I was now MRD-negative, so that was very reassuring. And, I actually just had another bone marrow about 10 days ago now, so I’m still waiting for those results to see what’s happened.

Jack:

And, are they gonna test that bone marrow for genetics as well?

Nancy:

Yes.

Jack:

Because you might find there are changes. You might find there’s a translocation where there wasn’t one before, you might find there’s a deletion where there wasn’t one before, because this myeloma is a fairly tricky disease, and we talk about the myeloma clone as made up of a percentage of different mutations, some of which get cured by treatment, and others of which expand because they were not affected by the treatment. It’s pretty interesting, in a lousy sort of way. Anything else, Doug, that you thought was interesting that came out of your genetic testing?

Doug:

It looked pretty standard and fairly boring to people who liked exciting genetic testing. I did have two, so I had one – so, my original doctor says, “We like to get patients early to get an original profile.” That’s kind of like your baseline. And, I also had one right before my stem cell transplant because they like to check to see if anything happened, but the doctor says the chemo messes with myeloma – obviously, that’s why you have chemo – and he says, “You’ll probably see some differences, but that’s why we like an original one, too.”

So, I compared the two, and really, there were no extra risks – high risks or anything – that appeared. The only thing that popped up was instead of tetrasomies, I had trisomies also, but that was pretty much it. So, it didn’t really change anything in terms of treatment in terms of work that was being planned.

Jack:

And, tetra- and trisomies are basically quadruple and triple duplications of your chromosome. So, I’m wondering, both Peg and George, have you had a second MRD testing, and why did you end up doing that?

George:

I don’t know that we’ve had a second one. Have we?

Peg Burrell:

Yes.

George:

We have?

Jack:

Oh, you had MRD testing?

Peg Burrell:

Yes, I’m pretty sure we had. He was in a clinical trial in 2018 at MD Anderson, and I’m sure they did it then. They also did some very unusual – not normal, but they were genetic tests that they ran as part of the – at the beginning of this study so they could get a baseline, or find out what other things might be going on.

Jack:

And, he did this MRD trial testing to determine if he had a significant number of cells with this BCMA antigen in order to qualify for this CAR-T trial?

George:

Probably.

Peg Burrell:

In the beginning, yes. That was in 2012. And then, he had his – he was in a second trial that was called Amgen 224. That’s all we know. It’s a mystery. And, it worked for him for about a year. It brought his cancer numbers back down, and there was a lot of genetic testing for that particular trial.

Jack:

So, I think just about any of these new trials that are coming onboard these days incorporate MRD testing. As we all heard earlier and we know, MRD is a really good prognosticating factor in terms of if a patient becomes MRD-negative, they show that they have better progression-free survival and overall survival. It’s not really used to change or determine treatment, but those trials are going on as well, so I think that’s really important.

And, there’s so many other avenues – again, back to this genetic testing, I always wonder, well, suppose I’m MRD-negative, but I’m high-risk, versus I’m MRD-positive but I’m standard-risk. Which is better? I don’t know. I don’t think the community knows, and I think it may be individualized as well. What do you all think about that? Any feelings?

George:

For me, I think that’s probably what is gonna be revealed to us as we move forward with this because the genetic testing idea is fairly new, at least to the patient. I’m sure that the doctors could pull each and every one of our files and show us all sorts of information that they just haven’t shared with us because of – it can be kind of complicated and hard to understand. Sometimes, I think that they try not to give us too much information because then, we have a tendency to think we can get on the computer and try to diagnose ourselves or find something.

Jack:

Little Rock, Arkansas was kind of the pioneer in what’s called gene expression profiling. And, we all have 25,000 genes, let’s say, and Arkansas kind of developed a test which showed that there were about 70 genes that were very distinctive in resulting in high-risk myeloma, except they were distinctive across, say, 50 percent of patients, but not the other 50 percent of patients. And then, they tried to get it down to even 15 or 25 genes, let’s say, and therefore, it was less accurate.

So, I think you’re right, George. I think there’s still a lot of work that’s gonna be done in this area to make it something that really can be useful in terms of having the best treatment for patients. There’s an interesting trial going on right now that’s looking at treating myeloma patients according to a mutation. If we have a certain mutation and we have a drug to treat that mutation – it could be for a different cancer – then that patient will be given a baseline of treatment plus that drug to try to increase the amount of precision therapy that’s given for given patients.

So, this whole area of genetic testing, as I see it, is really fascinating, complex, difficult to understand at the patient level, but can mean a lot for us as we go forward. What do you think? Peggy, I think you’re the most newly diagnosed patient here. What does all this mean for you?

Peggy Lindley:

I think his analogy of the alphabet soup is exactly right because when I looked at mine, I was like, “Those are words? Yeah, no.” But, I tried not to worry about it because I figured I was going to the best when I came to MD Anderson, so I really didn’t worry about it too much because I figured it’s gonna be what it’s gonna be, and I wanna – the quality of life is what I’m looking for.

Jack:

Well, I think you’re really correct there. The fact that you’re going to MD Anderson, the fact that we are getting second opinions from myeloma specialists who have a much better shot at understanding this stuff than we do is really key to long-term treatment success for us. There are a lot of drugs out there. In fact, I’ll often tell patients when I was diagnosed in ’95, there weren’t many treatment options. Today, the good news is there are lots of treatment options, but the bad news is there are lots of treatment options. You really don’t know what’s best for you, and that’s why it’s so important to have a myeloma specialist on your side.

George:

Well, with that, the idea of being able to target certain things within myeloma is gonna be a big step forward, I think, because it’ll help eliminate some of the things – the trials that we might try, or have to make a decision – “Do we try this or not?” We’ll be able to say, “This didn’t work, so this will – let’s try this.”

Jack:

Yeah. There’s a drug called venetoclax, which has been shown to be effective in myeloma patients with a certain mutation – 11-14 – and it’s in trials now to hopefully, one day, get approved for that class of patients.

Doug:

One of the things I’d probably add to the discussion is there’s a lot of talk about patient advocacy, and if you follow any of the myeloma discussions, it is almost all genetics now. That’s kind of where cancer research has gone, even in other cancers. But, one of the things that I see genetic testing is doing is my ability to help the doctor help me.

So, if it was more difficult to get genetic testing – maybe not local to a major facility or something – I would still encourage it because that’s helping the doctor see your specific disease, and maybe helping them modify what you have as a standard treatment in terms of what you need instead of the standard treatment. Plus, you have it in the bank then. You have your test, and if something is discovered a year from now, that this particular drug works with this particular genetic profile, you can go back, and look, and say, “Do I have that? Is that something I should consider?”

Jack:

Good point. Nancy, how important do you think it is for patients to 1) Insist that they get some type of genetic testing, and 2) to try to understand what’s going on?

Nancy:

Well, I think it’s extremely important. For me, it was a major change in treatment. Without genetic testing, I doubt I would be MRD-negative right now because my treatment path went along a completely different way. So, I think it’s extremely important. What was the second part of your question?

Jack:

How important it is for the patient to understand it.

Nancy:

I think everybody has a different level of what they can understand, and that it’s important for your oncologist to give you that information in language that you can understand, and to the level that you want. A lot of that’s gonna depend on your background, your education, what makes sense to you. I came from a medical background, so I wanted a little more knowledge, and my doctor was great in giving that to me.

Jack:

Patients need to ask questions.

Nancy:

Yes, they definitely need to ask questions, and then, the physician needs to communicate in a way that the patient’s gonna understand because it is a lot of gobbledygook, and I often – I have a hard time understanding it with having a medical background, and I often wonder how you make sense of this without having a background. It’s difficult.

Jack:

This has been a good discussion, and I think we’ll wrap it up. Peg, maybe I’ll start with you. Folks listening to this discussion – what do you think they should take away from it?

Peg Burrell:

Well, definitely, talk your physician, learn as much as you can. Support group for us has been very beneficial and helpful. Our support group brings in different people in the medical profession and has explained a lot of the things and given us knowledge we wouldn’t have had otherwise. And then, working with – sometimes, insurance may not wanna pay for certain tests. I’ve found that in working with MD Anderson, their financial people – we had some tests that were gonna be – I think they said “non-concerted.” I’d not heard that before. It basically meant they were questioning the test and whether or not it was necessary. So, MD Anderson was very helpful with that.

Jack:

George, can you add on to what your better half says?

George:

For me, it’s been working closely with Dr. Patel and her team, both when I was part of the clinical trial and even now, with the three-track regimen that they have me on. Again, ask questions, try to understand as much as you can, and I, too, support the idea of working with a support group and sharing information with each other because you find out so much more of what someone else heard through their doctor and their team because we all do have different doctors.

Jack:

Nancy?

Nancy:

I think it’s real important for people to go to a center of excellence, at least for a second opinion, if not for your treatment. They are the cutting-edge people that are gonna be able to treat you the best, and you can just google “center of excellence, multiple myeloma,” and you’ll get a list of all the centers all across the United States. I think it’s made a huge difference. I was treated at UAMS in Little Rock, and I wouldn’t have had it any other way. I was fortunate to be able to go there.

Jack:

Good. Peggy?

Peggy Lindley:

I think as patients, we all need to be as informed as you can, and work with your doctor, and get confidence in your doctor. If that doctor doesn’t do it for you, find another one, but be confident in your doctor that they’re gonna do what’s right for you, but you have to be educated as well.

Jack:

I heartily agree. Doug?

Doug:

I’d stress the same as everyone else, and also recommend definitely having genetic testing. One of the things that are kind of an intangible benefit is even your own stress level. You would think that, for instance, if you’re tested and you find out you’re not high-risk, you’re standard-risk, that’d be the end of it, but it turns out, for instance, even with me, my doctors will actually modify – have modified my treatments, even my maintenance treatments, because I’m not high-risk and I have very stable myeloma.

So, they’ll say, “Well, we’re going to de-escalate. We’re gonna take you off all these drugs. You don’t need all of them, so we don’t wanna over-treat, either.” Nobody wants to be over-treated with all the symptoms and things like that. When they initially said that, I was like, “Wait a minute, I’d rather just start adding drugs. Let’s just kill this thing.” But, that’s right, and I think the fact that I can go back to genetic testing and look at what he was saying about stability over a period of years and things like that just gives me more of a comfort level that that’s probably the right answer, and I don’t need to be taking all these drugs if they’re not gonna benefit me in the long term, or I could switch drugs if I need to.

Jack:

So, I guess I’d summarize it by thanking you all. You’re all terrific examples of being your own best patient advocate. If we aren’t advocating for ourselves, who else should? It’s really up to us, and the good news is there are so many resources for good information out there.


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.

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 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.

Living Well with Multiple Myeloma – Friendly Dieting

Friendly Dieting – Sifting Through Science vs. Hype

Living Well With Multiple Myeloma – Friendly Dieting from Patient Empowerment Network on Vimeo.

In this myeloma-friendly dieting webinar with Julie Langford of Cancer Dietitian (Cancer Services) and Danny Parker of MultipleMyelomaBlog.com , they lead a discussion focused on how to eat when you are living with myeloma. Both help us understand what “bad and good foods” are and what overall lifestyle changes may be helpful in allowing you to live a full life with myeloma.

Living Well with Multiple Myeloma – Staying in Tip Top Shape

Exercising With Multiple Myeloma – Staying in Tip Top Shape

Living Well With Multiple Myeloma from Patient Empowerment Network on Vimeo.

How do you exercise if you have myeloma? Should myeloma patients avoid exercise all together? Melanie House, a physical therapist at the University of Iowa Hospitals and Clinics specializing in prescribing exercise, shares how and when to exercise with myeloma.  Jim Bond, aka James Bond, a 25-year, stage III myeloma survivor and Matt Goldman, a 7-year myeloma survivor, shares how they stay active trough cycling and how they challenge themselves to stay in tip-top shape.

Myeloma Patient Cafe® July 2017 – What Life is Like with Myeloma

Patient Cafe® Multiple Myeloma – July 2017 from Patient Empowerment Network on Vimeo.

In this session of the Patient Cafe®, a group of myeloma patients will discuss what life is like now that they are living with myeloma.