MM Newly Diagnosed Archives

Your Multiple Myeloma diagnosis is just a starting point. Even though the path ahead may seem unclear or even insurmountable, armed with knowledge you can take control.

Let us help you become empowered to understand your diagnosis, to confidently ask questions, and to identify providers that are the best fit for you.

More resources for Multiple Myeloma Newly Diagnosed from Patient Empowerment Network.

Multiple Myeloma

This podcast was originally published by City of Hope Radio here.

Gargi Upadhyaya, MD, FACP – Speaker Bio
  • Topic Info: Myeloma is the second most common type of blood cancer, accounting for around one percent of blood cancer cases. It develops in plasma cells, white blood cells that grow in bone marrow. Myeloma most often affects the aged — most cases are diagnosed in people age 65 and older. Although myeloma grows within bone, it is not considered bone cancer.

    Listen as Gargi Upadhyaya, MD discusses multiple myeloma and the treatment options at City of Hope.

Get The Best Myeloma Care NOW: A Physician’s View

Get The Best Myeloma Care NOW: A Physician’s View from Patient Empowerment Network on Vimeo.

Advocating for yourself is critical when diagnosed with multiple myeloma. Dr. Peter Forsberg details the value of collaborating with your healthcare team on treatment decisions.

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

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take

Should You Consider a Second Opinion? Advice from a Myeloma Advocate 

Find Your Voice Myeloma Resource Guide


Patient education and self-advocacy I think are critical in multiple myeloma. Myeloma is a complicated disease. Getting your head around it can be challenging. Beyond that we have more and more treatments. Treatments are fairly complex. Our goals can be pretty different patient to patient. So really, patient education can be a key to understanding that and removing layers of complexity from something that can be a little challenging to get into.

I think self-advocacy is also really important in that, sometimes you can feel swept up into a wave of what the next treatments are gonna be, what the next steps are. So, making sure you’re taking time to voice your opinions or concerns for yourself, to make sure that you’re not leaving stones unturned in terms of what your best options are, what the best next steps are, what treatments or testing might be available.

I think myeloma, maybe more so than even some other diseases because it’s such a unique type of cancer, one where patients are often dealing with it for many years… Making sure that there’s a good level of education that evolves over time can help make sure that the patients get the best out of their treatments; to make sure that they’re able to have the most fulfilling experience dealing with their cancer and with their cancer team, and making sure that they’re advocating to get all options available to them in the mix potentially.

I think patients are often very thoughtful about knowing that providers are busy and that clinic can be kind of fast-paced, but I want to make sure that they know that the last thing that they’re ever doing is bothering me or other members of my team when they ask questions. I think one of the keys to making sure that everybody is comfortable with the steps we’re taking with their myeloma is to recognize that it’s a team. And the patients and myself and other members of my team, you know I think that the goal is for all of us to be on the same page and to understand what we’re working towards.

So, I think that my philosophy about how best to take care of patients tis to try to make it as collaborative as possible. To make sure people understand what we’re doing and why. And to be all on the same page I think you have to feel comfortable to take a moment to say, “Why are we doing this?” or to voice concerns about what’s going on or what the next steps might be.

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

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

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

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

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take

Discussing Treatment with Your Doctor: Key Questions to Ask

Find Your Voice Myeloma Resource Guide


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

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

Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take

Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take from Patient Empowerment Network on Vimeo

A myeloma diagnosis can be overwhelming and, in some cases, patients and caregivers may feel frantic or scared. Dr. Forsberg outlines clear steps to approaching a myeloma diagnosis.

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

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

Diagnosed with Myeloma? An Advocate’s Key Advice

Discussing Treatment with Your Doctor: Key Questions to Ask

Office Visit Planner


Dr. Peter Forsberg:    

I think being diagnosed with myeloma can be a big shock, so I think the first step is to sort of take a beat and work on getting the logistics of care lined up. I think the first thing you want to do is make sure you have a care team in place you’re comfortable with. That means support from friends and family. It also means providers you’re comfortable with. Usually you’re diagnosed by an oncologist and hopefully that’s somebody that you already feel a good comfortable relationship with.

I always think it’s worthwhile to consider getting a second opinion, another voice. And that could be even if you’re diagnosed at the most high-power academic center in the country, or whether it’s in a more community-type setting. I think having another voice just to make sure everything makes sense, that it seems fairly consistent, and that you understand things as thoroughly as you can. But you do want to get the ball rolling in terms of making a care plan and moving towards therapy if that’s the next step, without taking too much time.

So, I think it’s kind of a balance between making sure you’re really comfortable with all the participants in your care team, whether that’s one or more physicians if you have a primary and somebody else who helps to consult or guide as a more specialized voice. But also balancing that with moving towards the next steps in your treatment because often it is fairly time-sensitive to get going with management of the myeloma.

I think that the initial conversation can be a pretty complicated one. It’s one where we want to take plenty of time to work through a variety of different questions. I think some of the most important questions can be fairly open-ended ones. Ones that sort of help to take the conversation to maybe more broad areas. So, asking things like why. Is there a specific reason why we’re choosing this approach? What are the goals for our treatments?

So that everybody can try to get on the same page in terms of understanding what the rationale is, maybe making sure that nobody is missing anything in terms of what a patient’s goal is and that those are in line with the providers and that those priorities are understood.

I also think it’s important to ask pretty specific questions. I think lots of patients are pretty good about that in terms of trying to nail down expectations for logistics of medicines, things that we should expect as we start with treatments. So, I think it’s a balance between making sure we get into those fine-tuned details as well as taking a step back and asking those broad questions so that everyone can make sure that they’re seeing things in a similar way.

Why Getting a 2nd and 3rd Opinion Made a Difference In Her Cancer Treatment, With Sasha Denisova

This podcast was originally publish on WE Have Cancer by  on May 7, 2019 here.

Sasha Denisova – WE Have Cancer

Seeking out a 2nd and 3rd opinion in her cancer treatment resulted in a dramatic improvement in Sasha Denisova’s quality of life.

Sasha first appeared on this podcast in Episode 83 where she shared the struggle she faced getting doctors to take her colorectal cancer symptoms seriously.

During our latest conversation she discussed why she made the decision to forego treatment at the Mayo Clinic in Minnesota to seek treatment at Memorial Sloan Kettering in New York City. We also discussed:

  • How she got the courage to challenge the initial treatment recommendations made by her doctor and why it’s important for everyone to advocate for their best care.
  • The importance 0f seeking out opinions from the top rated cancer facilities in the U.S.
  • How she eased herself back into working out in the gym and why working with a guided fitness instructor was important.
  • Why exercise is vital to her well-being and how most cancer patients can find an exercise routine that works for them.

Take Control Of Your Care When You’re Seriously Sick via NPR

This podcast was originally publish on NPR by John Henning Schumann, Mara Gordon, and Chloee Weiner on September 7, 2019 here.

Finding out you have a serious medical condition can leave you reeling. These strategies from medical and lay experts will help you be in control as you navigate our complex health care system and get the best possible care.

Here’s what to remember:

1. Your primary care doctor is the captain of your health care team.

With any serious diagnosis, there will usually be more specialists to see. Having a primary care doctor you trust helps coordinate the information flow and keep track of the big picture. Your primary is on her toes for possible medication interactions. Regular preventive measures shouldn’t be overlooked, either.

2. Don’t be afraid to get a second opinion.

If you’re offered treatment such as chemotherapy or surgery that can be life-altering, it’s crucial to get more than one opinion, ideally from a doctor working for a different institution. Oncologists and surgeons expect patients to seek second opinions — many provide them as a major part of their practice. If your doctor resents you seeking more opinions, that’s a red flag.

3. Get organized, stay organized, and find someone to help you if you can’t do it yourself.

Make a list of what you hope to accomplish at the doctor’s office. If for some reason you aren’t able to take notes, bring someone along who can act as an advocate and make sure your concerns aren’t overlooked. Ask for copies of your medical chart and test results so that you are part of the conversation — you have a legal right to see your records.

4. If you need a procedure, go to someone who does it all the time.

It’s true for medical care as it is in life: The more a doctor does a procedure, the better at it she’ll be. This means fewer complications and better outcomes. It’s OK to ask your doctor how many times she’s done a procedure; a high volume means competence when things go as planned, and calmness for unforeseen complications.

5. Use the Internet, but use it wisely.

Contrary to what you may think, your doctor wants you to be well-informed and engaged with your health. There’s more medical information available online than ever before, but a lot of it is garbage. Stick with trusted sources like the National Library of, or learn about and use the U.S. Preventive Services Task Force.

6. Figure out what matters to you, and fight for it

Our default setting for health care is that more testing is always good. But that’s often not the case, as tests have side effects and can cause undue anxiety because of false positives or incidental findings. Have a frank conversation with your doctor about your values and what you want (and don’t want!) and you’ll be an empowered patient with a doctor as your advocate, not your adversary.

Learning How to Simplify Cancer With Joe Bakhmoutski

This podcast was originally publish on WE Have Cancer by Lee Silverstein on June 18, 2019 here.

Joe Bakhmoutski – WE Have Cancer

Joe Bakhmoutski was diagnosed with Testicular cancer in 2016.He founded Simplify Cancer  to provide support and advice to those touched by cancer. During our conversation we discussed:

  • Why he created Simplify Cancer
  • How he came to be diagnosed with Testicular cancer
  • How people perceive various cancers and how some are deemed “embarrassing”
  • What patients can do to prepare for their first oncologist appointment and the free tool he offers on his website to assist with this.
  • The book he’s writing to help men dealing with cancer.

Links Mentioned in the Show

Simplify Cancer –

Facing a Cancer Diagnosis: Advice From An Expert

Facing a Cancer Diagnosis: Advice From An Expert from Patient Empowerment Network on Vimeo.

Brittany DeGreef, a genetic counselor, provides essential advice for when you are facing a cancer diagnosis emphasizing that leaning on supportive friends and family is key.

Brittany Degreef is a Genetic Counselor at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about this expert.

See More From the The Pro-Active AML Patient Toolkit


One piece of advice I give patients who are just diagnosed with cancer – and we do frequently see patients at least once a week who were just diagnosed either that week or the week prior – is feel what you need to feel. Not every patient is going to react or cope with their diagnosis in the same way as someone next to them, even within the same family. That also goes for caregivers and relatives.  

 So, just because you feel like helping out a relative in a specific way, it might not be the same for your brother or sister or cousin.  

 So, we always tell patients that there is no wrong or right way to cope with a diagnosis of cancer. The way that you approach it is perfectly fine and there’s no right or wrong way to do that.  

So, another piece of advice we always tell patients is don’t be scared to lean on your support network, whether that be family or friends, your healthcare provider, advocacy groups, never be afraid to ask for help.   

And for some patients who feel like they have limited resources, usually hospitals where you’re receiving your patient care has many resources available to you, whether that be emotional, financial, spiritual, logistical. Don’t be scared to ask about those resources. 

Notable News February

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

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

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

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

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

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed?

As the president of the International Pain Foundation, a best-selling author, and chronic pain advocate, Barby Ingle shares her advice for the newly diagnosed. For all our A Conversation With… videos please click here.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed? from Patient Empowerment Network on Vimeo.

Advice For Newly Diagnosed Patients #patientchat Highlights

Last week, we hosted an Empowered #patientchat on advice for newly diagnosed patients. The #patientchat community came together and shared their best advice and tips.

The Top Tweets and Advice…


Ask Questions





Seek a Second Opinion





Stay Informed

Full Chat

Finding Your Voice #patientchat Highlights

Last week, we hosted an Empowered #patientchat on finding your voice and what stops patients from seeking a second opinion.

A second opinion is crucial to prevent misdiagnosis or unnecessary procedures or surgeries. A study done by Mayo Clinic showed that as many as 88% of patients who get a second opinion go home with a new or refined diagnosis. That shows that only 12% of patients receive confirmation that their original diagnosis was complete and correct. Still, a lot of patients never get second opinions. So, we wanted to chat about this and see what the Empowered #patientchat community had to say, and these were the main takeaways:

The Top Tweets…

























Full Chat

Finding the Funny When the Diagnosis Isn’t

It’s not easy hearing your name and [insert dread diagnosis here]. I know this only too well after having to find the funny in my own journey through cancer. Cancer is, however, most often a diagnosis that you fight to a defined end. What’s it like to find the funny in a chronic condition like multiple sclerosis, or HIV, or diabetes?

I have a number of friends dealing with the life-long aftermath of an MS diagnosis. One of them tipped me off to Jim Sweeney several years ago. Jim’s MS journey started with vision problems in 1985, he was officially diagnosed in 1990, and has been wrestling with the impact of that diagnosis – finding the funny most of the time – ever since. Jim’s body of work includes decades of live improv, and his one-man show “My MS & Me,” which you can hear on the BBC Radio 1 site. His MS has progressed to the point that he’s now in a wheelchair, and his public presence is mostly limited to Twitter, where his profile says he “can’t complain but sometimes do,” and YouTube.

Some other sterling examples of funny-or-die in managing chronic disease are Mark S. King’s fabulously funny My Fabulous Disease blog. Mark is HIV+, so he shares information, resources, and myth-busting about all things HIV in his posts and videos. He’s brutally honest about pretty much everything, with plenty of humor to soften the impact of what it’s really like to live with what anti-retroviral treatments have made a chronic illness, not the death sentence it too often was in the first two decades after the viral epidemic started in 1980.

Then there’s the “laugh out loud at the absurdity” Six Until Me site from Kerri Marrone Sparling, who writes about her life as a Type 1 diabetic. She covers everything from exceedingly random TSA security agent behavior when confronted with diabetes-related medical devices, to “pregnant while diabetic” to dealing with the emotional impact of living with a busted pancreas, all with a good dose of highly-readable snark.

How much courage does it take to laugh out loud, in public, at an incurable disease? Jim, and Mark, and Kerri certainly have courage – and comedy chops! – at the level required.

On the provider side, there are a number of docs who are breaking up the waiting rooms and wards.

The most visible of these comedic clinicians is Dr. Zubin Damania, a/k/a ZDoggMD  – “Slightly Funnier Than Placebo” was his tagline for years, before he shifted to “The Voice of Health 3.0.” ZDogg is a hospital medicine specialist who’s built an empire of snark over the last decade plus, some G-rated and some most definitely NSFW. His videos alone guarantee hours of laughter, and he’s one of the best users of Facebook Live around.

I’ve even found a scholarly article entitled The Use of Humor to Promote Patient Centered Care – be warned, though, that (1) it’s a “scholarly article,” meaning that it’s had all the laughs surgically removed and (2) they want $42.50 for it. You have been warned.

What’s my point here? I actually have two:

1. Laughter really is the best medicine.

Humor keeps us in touch with our humanity, and – unless it’s insult comedy, which I do not recommend in the health care arena, unless it’s insulting bad health care – it helps to comfort others in the same situation.

2. Patients and providers need to work together to help each other find the funny.

If you’re a doctor, don’t just say “you’ve got [insert dread diagnosis here], here’s the treatment plan, call if you have any questions, … NEXT!” Look your patients in the eye, and channel your inner comedian whenever it’s appropriate. If you’re a patient, connect with other people in your situation and see how they’re finding the funny. And help your doctors find their funny. If they can’t find it, you should find another doctor.

We all need to work together to break each other up. Laughter can comfort, can calm, it can even heal.

That’s real disruptive health care, no prescription required.

How Can Patients Learn About New Myeloma Treatments?

Living Well with Multiple Myeloma

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

Downloadable Program Guide

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jack Aiello:
I agree.

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

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

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

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

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

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

Jack Aiello:
And Dr. Richter?

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

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

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

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

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

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

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

Same question for Dr. Krishnan.

Dr. Krishnan:
I think‑‑

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

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

Jack Aiello:
And same question for Kristen Carter.

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

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

Jack Aiello:
For those listening, don’t forget you can e‑mail us questions at

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

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

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

Kristen Carter:
Thank you.

Jack Aiello:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jack Aiello:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dr. Krishnan:

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

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

Jack Aiello:
Dr. Krishnan, anything else?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jack Aiello:
Heavily pretreated, yeah.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Kristen, can you offer your summary comments?

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

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

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

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

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

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