Published on September 20, 2019
Watch the afternoon replay of our “Understanding Multiple Myeloma: A Comprehensive Look at Emerging Treatments & Testing” Town Meeting to learn strategies for managing day-to-day life with myeloma. An inspiring patient panel and a social worker discuss tools for living well with cancer and ways to become empowered. Myeloma experts Dr. Krina Patel, Dr. Sagar Lonial and Dr. Pei Lin also answer questions from an audience of myeloma patients and their loved ones during a Q&A session.
This town hall meeting is sponsored by Janssen Biotech, Inc. and Karyopharm Therapeutics with additional support to our partner, Myeloma Crowd (MCR), from Takeda Oncology and Foundation Medicine. These organizations have no editorial control, and Patient Power is solely responsible for the content. It is produced by Patient Power in partnership with The University of Texas MD Anderson Cancer Center.
Thank you for being such a good resource of fast-changing information for multiple myeloma patients.
Transcript | Myeloma Empowered Patients & Expert Q&A Session
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. 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.
So, I’d like to welcome back both our in-person audience and online audience. I think this morning’s session was really educational. We’ll have the doctors back up here around noon time, Houston time, to answer more questions that you all have.
In the meantime, I think it’s really important to understand from patients like yourself how best we live with myeloma, what things should we be doing or not doing. I have two patients and a caregiver up here who I will ask to introduce themselves.
Beforehand, I wanted to ask Thomas Verm, a licensed social worker, a question because I have to tell you, when I was first diagnosed, I was given a 96-hour infusion in the hospital. That was the treatment back then. I remember feeling fine. But then this one lady walked into my hospital room. She said, “I’m a social worker. I encourage you to go to The Leukemia Society support group tonight,” that was in the hospital.
I honestly, between you and me, didn’t want to go to any touchy-feely meeting, and I said to her, “I don’t have leukemia. I have myeloma. Off you go.” She stuck around and explained to me how The Leukemia Society was for all blood cancers, of which myeloma is one.
I remember dragging my IV pull up to this meeting and meeting and listening to different patients and they had things like ALL, which is acute lymphoblastic leukemia. But I had no idea what it was or someone introduced themselves and they had non-Hodgkin’s disease, but not knowing what Hodgkin’s was, non-Hodgkin’s didn’t matter to me.
Then somebody actually said, “He had myeloma.” That was the first time I saw someone living and breathing with this disease that I was told that I had and would live for two to three years with. That was really important. So, I think it’s really important to meet other patients, to get educated with patient experiences. I owe that because he shared a lot of resources with me—I owe that to that social worker who I never got to thank.
So, maybe through Thomas I’m thanking that social worker that had an impact on my life. I guess I want to understand better when do you get involved with patients and how exactly does that work? Do you just barge into hospital rooms or clinics where they’re getting drips? How does that work?
That’s the case sometimes. A lot of times when we’re called to talk to a patient, it’s for some sort of distress going on in their lives. We normally can tell that based on a tool that we use called a Patient Needs Screen in the hospital, both inpatient and outpatient.
That kind of tells us a little bit about what’s going on with that patient on that day. It kind of measures how much distress you’re feeling right now. It measures whether or not you’ve had feelings of depression, anxiety. It has a box to check if you want to meet with a social worker and talk with a social worker.
So, what that does for us is it gives us a little bit of insight into what kinds of issues are going on and how we can best help out. So, for my job being in the outpatient clinic, most of my referrals come from those patient needs screens.
So, when you guys go into the office and you have to fill out all those little boxes, that referral is sent to us to where we can reach out to you guys and be able to work with you on what’s going on and try to help out where we can and provide that support.
Do you always reach out face to face or do you sometimes connect via phone or email to set up a subsequent meeting?
It depends. Obviously, some issues have a little bit more urgency than others. So, if we have a really strong reason to see a patient in the clinic, we definitely want to be there and meet them in person and be able to discuss what our job is and what our role is in the care team so that we can provide that support.
I do make a lot of phone calls to patients just because with my clinic, I cover six or seven different doctors now. There can be like 60-80 folks coming through my clinic in a day. So, if you think about 60-80 patients coming in and signaling some kind of distress, we get lots of referrals.
But we try to meet everyone we can in-person, because it’s a better connection most of the time. If we do miss you in the clinic, and we give you a phone call or send an email, and you do express interest in seeing us again, we’ll try to schedule the time the next time you guys come in for your appointments so that we can sit down with you and talk about what’s going on.
Well, you do an incredible job and I thank you for it.
I know a lot of social workers by now and I’m always appreciative of their work. Our first patient is Merlin Moseman and his wife, Beth. So, Merlin, maybe you can share a little bit about yourself. When were you diagnosed? Maybe what caused your diagnosis. What treatments have you gone through? Maybe what difficulties you’ve faced along the way.
Thank you. Again, my name is Merlin Moseman. I live in the Houston area here. I was originally diagnosed when I had back pain. My primary care physician was gonna treat me for that back pain. Fortunately, my wife stepped up and said that I needed to have further diagnosis to determine what was causing this back pain.
We got an MRI done and discovered there was a tumor on my spine. That started the ball rolling with the tests and so on to determine that I actually had myeloma. This was in 2011, the end of the year in 2011. From there, I went into the hospital of course in radiation treatment and chemo treatment and the decks and solved my back pain and also prepared me for the transplant. I had auto transplant in April of 2012.
About five months after that transplant, I started my maintenance therapy. My first one was bortezomib (Velcade). I was on that for about three and a half years. Then I was switched over to lenalidomide (Revlimid). I headed dexamethasone to that. About two months ago, I started with the elotuzumab (Empliciti). I’m in the process of living on drugs. I don't know what else to say.
How was your pain situation during this whole period?
I really had no pain. I had a little bit of neuropathy in my feet. But otherwise, pain-wise, I have not had a problem with that—not yet anyway.
And the elotuzumab, also called Empliciti, that’s you’re on, are you taking that only?
I’m still on Revlimid and dexamethasone (Decadron).
I’ve got the three, the triplet, I guess they call it. Elotuzumab has been very effective for me. So, I’m very happy with it.
Good. If you’re not aware, elotuzumab is the other antibody that’s approved for myeloma and you’re getting it once a month or…?
I am now every other week.
Every other week. Beth, your lovely wife, I’m sure was—first of all, congratulations on being persistent for him to have things checked out, as most wives are. Most guys I find say, “I can get through it.” The wives are better. So, what was it like for you. He was diagnosed with this cancer, number one, probably of something you’ve never heard of.
Yeah. Well, I’m a nurse. I had heard of it, but I did not know much about it because I delivered babies and worked in surgery. It was something new as far as more details go. But I want to say that everybody has that right and they need to stand up for themselves and be your own advocate because if you’re not, it’s gonna take a long time before they figure it out, in a lot of cases, not in all.
But they were using the back pain protocol for him for chronic back pain. This was not chronic. It was acute. When they got to the point that they wanted to do physical therapy, I’m thinking as a nurse, “He’s got a back issue and they’re wanting to do physical therapy?” I insisted that they do an MRI and they did an X-ray. Of course, that told everybody he had arthritis in his spine is what it was. Well, he doesn’t have arthritis. I knew that.
So, I said, “Well, what if I pay for it? How much does an MRI cost?” I said, “If it’s under $1,000.00. I’ll pay for it, because I’m not waiting for insurance.” Sure enough, it was under $1,000.00 and I talked him into it and they did it. They did an MRI. When it came back, they all got excited. They really got excited. Then they started wanting to test everything.
The end story of that is the insurance company paid us back when they found out the results. They went ahead and covered it and paid us back that amount of money. So, that’s an option for sometimes when you want to get something done and need to get something done and can’t get it done because of the system. I forgot the question you asked me.
Just how difficult was it being diagnosed.
Okay. Yeah. There were a lot of people that helped and one thing that I think helps the most is being in a support group. We saw in the paper an advertisement for a support group. It was local and so, we went.
Just meeting other people that are in the same position that you are that have the same questions you do or maybe some that have already experienced what you’re wondering about and to hear a story from others and to be able to share and then you offer your experiences with somebody else, it really helps.
Sometimes you just need to talk about it and you need to get it out there and find out that other people are going through the same thing and everybody’s different. That’s another thing that we learned in the support group that everyone is different.
Everyone reacts to drugs differently. Everybody’s myeloma is a little bit different. So, you’re all treated a little differently, but that’s okay. You learn that when you have a big enough group to share. I think that’s what’s helped us probably the most.
I would echo—I mentioned before the importance of support groups. I facilitate a San Francisco Bay Area support group. If you’re in Houston or online from a different location, you can check, for example, the International Myeloma Foundation, which has a great site at myeloma.org and they will have a listing of all the support groups throughout the US and Canada.
I think you should take advantage of patients who have been in this for a while as well as helping out, paying it forward, newly diagnosed patients and like most support groups, I know we will have expert doctors like Dr. Lonial and Dr. Patel come to our meetings and share their wisdom with us. It can eb a very educational resource.
Carl, can you share some information about yourself with us?
Yes. I’m Carl Burgman. I’m from Tulsa, Oklahoma. My myeloma issues really did start with a compression fracture in the back. That was right at about 12 years ago. My internist at the time was very good about going through—I was 48 at the time and that’s of odd for osteoporosis in men. He did have all the normal testing for osteoporosis but he did have the testing done for the serum protein.
I showed up that I was positive for an M spike. He sent me for bone scans and then to a hematologist. They came back, did the bone marrow biopsy and it was MGUS. I was followed for probably a little over ten years every six months to have blood tests or if it went up three months and then another bone marrow in the middle of that.
Finally, at the end of ’17, my end protein started going up and I finally had the bone marrow done again and got my diagnosis February 28th of 2018. My oncologist in Tulsa just looked and said, “Well, you’ve now gone into multiple myeloma and you’re a high-risk patient, p17 deletion. I’m sending you directly to MD Anderson.”
So, I feel like once I got to MD Anderson and actually became Dr. Patel’s patient, I really hit the jackpot on care because I got started, went through the tests. She told me originally that I would be orb in the smoldering range. I went through the isatuximab clinical, had another bilateral bone marrow and one of them came up at 60 percent. So, I got knocked out of that.
I got set up then to do the induction treatments and she got me started and actually did KRD for induction and only had two months of KRD before I was knocked down before getting into the stem cell protocol. At that time, I also qualified for a vaccine trial.
So, before the stem cell and that, they gathered all myeloma cells, sent those off, then did the dendritic cells after the stem cell, and my numbers were knocked way down both with the KRD and the stem cell. I came back and I had qualified on the vaccine and they went to mix the dendritic cells and the myeloma cells, and all my myeloma cells died.
So, I got knocked out of the vaccine side and got put into standard practice of care. So, I was on Revlimid and going through and my numbers all looked good. Then April of this year, my light chain ratio started going out of whack. I started relapsing in April.
So, it just so happened at that time that the clinical that Dr. Patel is the lead on for the CAR-T cell, the bb2121 was opening up, and there’s an arm for that for my qualifications, relapsing within 18 months after an autologous stem cell. She worked real hard with the sponsor and actually with my insurance company.
I can’t say enough that the nurse liaison at the insurance company told me afterwards that she has never worked with a doctor so caring and compassionate about getting a patient into a clinical trial. She was a clinical trial nurse before she became the liaison at the insurance company. She’s worked with several of them.
So, I think that I’ve been just extremely blessed and lucky with this, to have this stuff going on and not have pain. I’m lucky. Bone marrow biopsies don’t bother me. So, I’m blessed there. I think I’ve run up to about a dozen now.
You mentioned to me last night that you are in that CAR T trial now, and you have harvested your T cells, and they’re getting re-engineered.
I’ll be getting them back the 24th of September.
So, big month for you.
Yes, it is.
Good. Can you indicate—this session is all about empowerment. How did you yourself become empowered to learn about this disease, make treatment decisions? You clearly found and got a second opinion from an expert, Dr. Patel, who’s now your doctor and I’m sure that helped. Were there other things you did?
Yeah. I’m an engineer. So, I’m kind of anal by background. The first things I did was to go through—even with the MGUS diagnosis, I went through a lot of research. You look online. I limited my looks to places like Emory, Dana-Farber, the Mayo, MD Anderson. There’s just other information out there that’s—I went to the Myeloma Foundation and myeloma.org.
I looked up the different things that were going on. What does this mean to me? What is high risk? Dr. Patel was extremely helpful and her staff on what high risk means versus non-high risk with the chromosome issues.
So, I looked up and studied the things and then looked at the national site for clinical trials, what’s going on, and did that kind of research. MD Anderson sent out a little postcard for a Patient Power seminar Dr. Manasanch was doing on MRD, signed up and watched the webinar on that and have been following weekly when the emails come out and different things go on with the different—like the ASH conference and things like that, results coming out.
I do stick with looking at those things and what Patient Power provides. When I saw that Dr. Patel was a host on this or a lead, I asked her about it and she said, “Were you planning on coming from Tulsa for it?” I said, “Yes.” She said, “Good, you’re on the patient panel.”
Good. And one of the things I would mention to you here is you all have this blue folder. That includes a list of a lot of these resources you mentioned in addition to the institutions and the multiple myeloma or the International Myeloma Foundation, there’s also MMRF, which is Multiple Myeloma Research Foundation. There’s The Leukemia & Lymphoma Society.
There’s one of the sponsors for this organization called Myeloma Crowd. Of course, Patient Power. So, there is a lot of information out there these days for reliable, current, and really excellent information for myeloma patients. Take advantage of those.
Merlin, what about you? How did you go about empowering yourself?
Well, I relied mostly on my oncologist, Dr. Thomas. I do monitor the Patient Power videos, and I find those very educational. I also get the International Myeloma Foundation, they send out monthly updates on the clinical trials and so on. So, I try to keep up to date on those as well.
I was gonna mention I’m an engineer as well. Because of my back issue, my doctor took away my toys. They were all too heavy. She recommended I go back to work, which I did. So, I worked another six years after my diagnosis and I had a very fortunate employer who was tolerant of my—I worked downtown in Houston.
So, I would just take a train down to the Med Center and get my shots or injections and go back to work. Most people I worked with had no idea that I was getting treatments because once my hair grew back from a transplant, I looked almost normal. But I try to keep up online with the current information and it’s sometimes overwhelming but I wish I knew as much about it as you do.
I’m a bit like you. When I was diagnosed and went through a lot of treatments, I was still able to work at that time. I was in marketing at the time. For me, it gave me a sense of productivity and things to think about other than myeloma. You need some normalcy in your life, I think. That really helped me.
I think it’s also up to each patient. You need to talk to your doctor in terms of do they recommend you go back to work or not. You may have a more physical job than sitting behind a desk. So, it’s a very personal thing. I don’t think you should immediately assume that you can’t work anymore.
Beth, I know you were the driving force really behind his research, right?
Yeah. I was glad he went back to work. There’s so much—life is more than just your illness and we all have something that we all have to deal with, whether it’s myeloma or whether it’s something else. You just live one day at a time and do the best you can and do what you want to do.
We have found here at MD Anderson that if we want to plan a trip, just tell them ahead of time, and they’ll work your schedule around it so that you can do that trip. You don’t have to be tied to this place just because, which is a good thing.
So, plan your trips a little bit ahead. It doesn’t have to be long, a month ahead is plenty. They’ll work with you. That helps keep you in your treatments but yet it has enough flexibility that you can live your life, and that’s what we really want to do is live your life.
So, I made an error when I asked you to introduce yourself, because I also wanted you to include a fun fact about yourselves because we are more than our myeloma. So, Merlin, someone told me that you have a—is it a model tractor collection or something like that? Tell me about that.
I collect toy tractors.
How big are toy tractors?
They’re 16th scale, yes. They’re actually toys for kids are what they’re for. But I grew up with these. I still enjoy them.
How many tractors are in your collection?
I have over 20, but my grandson is starting to rob them.
That’s okay. Grandsons are allowed to do that.
Carl, I heard something about you and how you met your wife?
Yes. We met on a blind date. It was at the point where we were working in Amarillo, Texas and one of the guys I worked with got married and got married to somebody that had gone to college with my wife. They had run into each other, and Jenny just asked if her husband worked with any tall single people.
And we hit it off. We were both Dallas Cowboy fans. We had a common thing there. My standard joke is we met on a blind date, and she’s never regained her sight.
Thomas, tell me what resources do you supply your patients or how do you help them, specifically?
Sure. We have a whole list of resources that we go through. It really depends on the specific needs of the patient. Patient Power is obviously a great resource. They didn’t pay me to say that. That’s just a good one to go to.
Also, The Leukemia & Lymphoma Society like we mentioned before is also another really good resource. They have some really good financial resources linked to like co-pay assistance and travel assistance.
And for folks that are engaged in a clinical trial or folks that are young adults, there’s an emergency assistance fund which has been really helpful in the past. They’re actually really quick about getting back in touch with you too about whether or not you’ve been approved and when you can start to see some of those funds come in.
But we also have different resources we reach out to like American Cancer Society has a hotel program and a transportation program. So, if you’re local, sometimes they’ll be able to come and pick you up. They’ll have volunteers that bring you to and from your appointments, which is helpful for a lot of folks that have caregivers that have to be at work or have to be doing something else.
We also have resources and different support groups that we have both institutional at MD Anderson but also in the greater community. So, it’s really a mix of a lot of different things. A lot of the ones I deal with are disease-specific, meaning they’re specifically for blood cancer patients. That’s how we’re able to focus in on what might be helpful to a patient that has a lymphoma, myeloma or leukemia-type diagnosis.
You actually work with the patient with respect to financial resources? Will you put them in touch with a drug company that may have a payment program available or LOS, which might have co-pay assistance available and such? Does the patient do that? How does that work?
So, a lot of the legwork is in the hands of the patients just because we work with so many folks on getting in touch with these people. We do offer them the list of resources as in these are some places that you might want to reach out to discuss whether or not assistance is available.
Like, Revlimid is a program that has an assistance program for patients under specific criteria. Some of those pharmaceutical companies do offer copay assistance for those kinds of really high-dollar drugs. But we do try to offer as much as we can in terms of putting the power in the patients’ hands to be able to reach out to these places and hopefully get beneficial results.
You bring up a good point, especially for the expensive oral therapies. I would say all of the manufacturers who make those oral therapies do offer patient assistance programs. The only negative, though, is that they generally aren’t available for public programs like Medicare.
So, in that case, you would go to a copay assistance program offered through an advocacy organization like The Leukemia & Lymphoma Society or Good Days or HealthWell. They are around but it does require some legwork. You all provide it sounds like a great listing.
There are some lists of those in your packets. Most of the advocacy organizations if you go on the IMF website will also provide a list of financial resources. It requires, like I said, the legwork, but at least it’s available.
A lot of patients find it beneficial to have some productive things to do, especially when you’re inpatient and there’s not really much for you to do. A lot of patients really benefit from having something proactive they can put their hands on and work on as opposed to waiting for their treatment to complete or ruminating about all the negative things going on.
So, Merlin, you’ve been diagnosed now for eight years. What advice do you give to—I don't know if you come in contact with newly diagnosed patients, but what advice would you give to newly diagnosed patients?
We’re told when we first go to our oncologist to ask questions and take notes. In my case, I take my wife, who has a much better memory than I do and asks the right questions. It also helps to have somebody with you. You don’t hear everything the doctor tells you, I found out. I miss things.
So, having somebody there with you, I think, is a very important part of your treatment plan. That will be the primary thing I would recommend to the patients is that they have their caregiver as part of their treatment plan.
And if you don’t have a caregiver to go with you to every appointment, take a tape recorder. In the old days, when I was diagnosed, I would take pencil and paper. I would have a set of questions to ask. I would ask them.
I would write down the answer, and I wouldn’t allow the doctor to look ahead at the next question until I got done writing the answer, because I really did want to absorb as much information. By the way, I’m also an anal engineer. I wanted to get as much understanding of what was going on as possible.
Bev, what about for caregivers? What do you recommend who don’t necessarily have a nursing background, which I think was a good benefit for you?
I think caregivers need to just be there, first of all, as a support, but they need to be assertive too. Like we did with the MRI, sometimes you just have a gut feeling when you need to speak up. Don’t be afraid to do it. And then I go back to the support group too of sharing and hearing experiences from other people.
Sometimes you think something that’s happening is not good, but then when you talk to a whole room full of people you find it’s happened to everybody. So, it’s not so frightening. So, keeping communication open with other people in a support group is also really good with that.
It’s also a place that you might hear other questions you should be asking your doctor.
I think they’re valuable for that too. Carl, what advice would you give to especially newly diagnosed patients?
The one I would definitely give would be to get to a major clinic. A lot of places, they have good cancer clinics but the oncologist is treating breast cancer, kidney cancer, lung cancer, here’s a multiple myeloma—if you’re especially high-risk where you have the chromosome issues and that, the majority of those places probably do not have the access to the proper things to give you the treatment right and don’t have the access to the clinical trials.
If you can get the referrals to an MD Anderson, Emory, Mayo Clinic, Dana-Farber. If you can get to those places, you’re going to be—even if you’re not high-risk, you’re going to get the most current, best knowledge of what’s going on with your disease.
If it’s something that can be treated at home, then you have that information and that treatment recommendation from the major clinic to take back with you. I feel real lucky, because my oncologist knew that he wasn’t gonna treat a high-risk patient. They were affiliated with MD Anderson and got me here.
I think that would be the first thing I’d recommend to any newly diagnosed multiple myeloma patient is if you’re not at a major clinic or near one, get to one for at least your second opinion. I think that’s…
…even if you are treated locally, that doctor at the major institution can work with your local oncologist, right?
You all seem like you’re doing well. You sound like you have good states of mind in terms of dealing with this disease. You appear to be comfortable with the terminology. There’s so much new terminology that goes with this disease and such. I think that goes to the fact that you really have empowered yourselves to become more and more familiar with this disease.
\So, I’ll let all four of you have parting words in terms of final things, final messages you might want to impart on both our in-person and online audiences starting with Carl.
One thing for me is I do have a strong faith. I feel in all the places and positions and things that I’ve been moved to to get to where I am in this clinical, things happen for a reason. I know that when you first hear multiple myeloma and it’s “incurable” it’s remission, relapse, all of this, you can get a little bit blinded by that.
Ultimately, I think everybody has their time it’s gonna happen. You can turn around get cured. I have a little joke about that. I could walk out of this clinical trial and be cured and never have any relapse and 10 years later be walking down the street and the blue ice falls from the plane and hits me. We all have our time. Is it going be this disease, a car wreck or whatever?
I feel that being put in the positions that I have been that I’m getting the best treatment and I don’t think it’s the disease that’s going to kill me. It’s probably going to be something else. I see with all the medications and everything it’s getting to be more a chronic condition than an incurable condition.
Yeah. We have lots of treatments and the more we have, the more we can manage our treatments. Beth, what would you like to end up saying?
I would say don’t do it alone. Whatever that means, whether that means family, friends, support groups, medical team—there is a team behind the scenes that are working for your particular treatment and everybody’s is different—but don’t do it alone. Speak up. Share. Get all the information you can. Have someone help you.
Merlin, your words of wisdom?
One thing I would mention is learning to deal with your side effects and managing those. Your doctor can help with that as well. Having something to do besides sit around—I miss work. I retired a little over a year ago.
I did find that I worked with a lot of engineers at the time, and I was always getting sick every month. I discovered that it’s because they have kids in daycare. So, as careful as I was, I was still getting sick. That’s the part of work I don’t miss. But you miss the people that you work with. That’s about all I can say.
I would add to the side effects thing—don’t get all macho about it and decide, “Well, it’s just a little bit of diarrhea that I have. I don’t have to say anything.” Make sure your doctor knows what’s going on. There really are lots of treatments out there for side effects that enable you to feel better. That’s important. Thomas, what would you like to say to this audience?
I think Beth said it really well when she said don’t go it alone. You do have lots of folks that care about you and are supporting you through this process, whether that’s your medical team, your friends, your family.
Everybody that’s involved in your circle is directly connected with you through this. If you have a question, if you have a concern, reach out to folks. Reach out to your social worker if you want to know about those different kinds of resources for mental health. You don’t have to be super crazy to reach out to your social worker.
You’re going through a difficult time. Ask for that help and receive that help when you go through the process. Make sure you don’t close yourself in. Open up and communicate with those folks around you about what’s going on, so you can get connected with the right support and the right care.
Thank you all very much for those astute words. I appreciate you sharing your stories and the expertise of a social worker that you bring. At this point, we are going to swap you all for the doctors so we can have a follow-up Q&A period. Thank you.
A number of questions have come in. I have a list of questions and we’ll be taking questions from the audience as well. For the audience folks, there will be someone roaming around with a mic. She’s waving her hand back there. Before you start asking your question, wait for the mic arrives so everybody can hear it.
I’m gonna begin with a question. We haven’t really talked about transplants. It’s still certainly a standard of care for patients. Sometimes patients, it will be suggested that they after a few years go on to a second transplant. Do you ever suggest a second transplant? Along with that, are previously harvested stem cells still viable and how long are they viable for? I’ll start with Dr. Patel.
Sure. Yeah. Most of my patients if they’re eligible go to transplant up front. Then it depends. If I have a patient who did really well after transplant, got four or five, six years just on maintenance and then they’re having a slow progression, and they don’t want to do full dose therapy, they’d rather go back into that mode of, “I just want maintenance again later,” I will offer a second transplant. I think our numbers are about 10 percent of our patients go to a second transplant.
On the flip side, because we have all these newer therapies, the future, I think it’s probably less and less patients are going to a second transplant. What I’m seeing differently is a lot of my patients come to us at the beginning and sometimes don’t want the transplant part, because that’s the one part of myeloma therapy that is in the hospital, and you do lose your hair.
It means you’re out of commission for a while.
Even if it’s outpatient. There are more people asking if they have to go to transplant up-front. I think right now, we don’t really have data to support not doing it up-front. I do have patients who prefer not to and we don’t. We do a salvage transplant. We try to collect those cells ahead of time if we can if they decide to do that.
In terms of how long do stem cells last, I guess my patient who had the longest storage was 13 years before we did their transplant. So, when they signed at MD Anderson, it says five years on there that we collect. We hold them pretty much forever. I would say the longest was 13 years it was in storage and it still worked. We test for viability, of course, before we would ever give those cells back, and they were fine.
Dr. Lonial, kind of the same?
Yeah. I think right now, the most common indications for a second transplant at our place is people who have been on treatment for years and years, and their counts are just really low. You can’t get them on a trial, or you can’t get them the treatment, because the white count is too low, or the platelets are too low. We’ll do a second transplant not with the intent of long-term remission but with the intent of rejuvenating the bone marrow, so they have good counts again and can get other therapy as needed.
Okay. Another question that came in—I think we may have already answered it—Susanne asked, “Is CAR T only available after multiple relapses after treatment?”
Yeah. For myeloma, currently, we don’t have a standard of care. It’s only in clinical trials for now. Most of the trials that were done in the last three years have been in relapsed/refractory patients. However, the current trials are now looking at doing it sooner. A couple of trials that are open already we are participating in is mostly for more higher risk patients. But for instance, if you relapse within 18 months of your initial therapy, we have a clinical trial looking at bb2121 in that patient group.
That’s the one that Carl is getting into.
We have that. Another arm of that trial is looking at patients who are after transplant but they don’t get a PR or a VGPR. They only get a PR, a 50 percent reduction. They don’t get to 90 percent reduction. They’re actually looking at giving CAR T as consolidation to see if that helps. There are different questions being asked.
Now, the other trials are actually looking at lines two to four. So, if you’re in the second line or third line or fourth line, can we now use CAR T there and see if that actually improves outcomes. So, there are multiple trials like Janssen, Celgene, everyone is sort of looking at that patient population moving it forward to see if the T cells are better.
Thank you. Question from the audience here—raise your hand. The mic is coming towards you. Say your name and ask your question.
My name is Mike Boyd. I belong to the Kingwood Woodlands myeloma support group that Beth Moseman has. I’ve had a breeze of a 15-year myeloma with very little difficulty until now. I can’t sleep past 2 or 3 in the evening, because of extended neuropathy, not with pain, until now, only with numbness.
Now, my body because of feelings in my legs want to shift all night, they want a different position every hour or two, I end up getting up at 3 or 4 in the morning. I brought it to the attention of my doctor and he said, “We can reduce your ixazomib (Ninlaro),” which I’ve been on, which has given me stability for some time, “But, of course, your numbers would go up if we do that.”
Let me summarize your question and ask it general. A lot of patients deal with neuropathy like you’re dealing with. When you have a patient like that, Dr. Lonial, what do you do?
Well, I think the balance between efficacy of the treatment and its impact on quality of life is one that we really need the patient to help guide us on. We can hear some things but if they’re not accompanied by what you just described to me, which is I can’t sleep past 3:00 or 4:00 in the morning, then it’s hard to know what the context for that side effect is.
So, at least in my mind, there are enough other things out there that if you need to come off the drug to give you better quality of life, then you should come off the drug to get better quality of life. We do have lots of different agents that we can use. They may not all be as convenient as ixazomib, which is what you’re on, because it’s a pill. That doesn’t mean that we can’t get you back in control and figure out how to work around those issues.
Another question that came in from Bob has to do with the disease called amyloidosis. We sometimes hear of patients being diagnosed with primary amyloidosis, but more often than not hear about myeloma patients who have progressed or also have amyloidosis. So, Dr. Patel, can you explain a little bit about amyloidosis and are the treatments different? How does one go about that?
So, yeah. I would say that probably 10 percent of our patients that have active myeloma can also have amyloid, that diagnosis. So, I do have a lot of patients that have both. I have some patients that don’t have myeloma but still have AL, amyloid, that we sort of treat as a plasma cell dyscrasia.
So, what I tell my patients—amyloid is a different protein that we can’t really find in the blood like an SPEP or monoclonal or immunoglobulins. So, you have to find it by a biopsy of some sort. And there are different types.
So, plasma cells make amyloid. Sometimes I have patients who have myeloma, and their bone marrow might show some amyloid. We do a stain called a Congo red that tells us that. But if it’s not affecting an actual organ, we don’t call that systemic amyloid that we would treat. There’s a difference in terms of is this clinically relevant or not.
Where it really does affect people—it can get in the heart. It can get in the kidneys. It can get in the GI tract and sometimes the skin and the tongue. Those are the classical places we find it. It’s a protein that’s really sticky. It just gets in and then it causes problems with that organ, because it can’t work as well.
So, for most of my patients, if they have something that they tell me at the diagnosis or even in relapsed disease, they’re having really bad diarrhea. It’s not related to the therapy they’re on, I might say let’s get a colonoscopy to find it.
Treatment is similar but not exactly the same. So, with amyloid and some of our other plasma cell dyscrasias like POEMS and Waldenstrom’s that we don’t talk about as much. A lot of our therapy comes from myeloma therapy that we then try. That’s sort of where we are with amyloid.
So, standard of care, instead of VRD or KRD, if you just have amyloid and you have kidney involvement, we might do CyBorD (cyclophosphamide, bortezomib and dexamethasone) But if your kidneys are okay and I don’t think you’re gonna have problems with your heart, there might be other therapies we use. Daratumamab (Darzalex) has also been looked at for amyloid, and it seems to work really well. It’s been in relapsed patients, but of course, there are a lot of clinical trials that a lot of us are participating in for patients with amyloid.
Good. Dr. Lonial, fatigue is something that a lot of myeloma patients go through. A question was asked by someone, Kim, who said that she’s read about trying a stimulant like methylphenidate (Ritalin) to get over the fatigue issues. Is that viable? Are there other suggestions on how to overcome fatigue?
Yeah. The first question I have is is fatigue drug-related or is it disease or treatment-related? If it is drug-related and it’s interfering with daily activities, then we need to think about dose adjusting or stopping the drug to see whether that’s really the causative factor.
A lot of it, I think, ends up boiling down to some patients particularly after transplant remark about fatigue and it’s hard to know whether that’s just recovery from the transplant or the fact that you’re not on steroids anymore.
When you were on steroids, you felt like you could do anything. So, some of that fatigue is just reacclimating with not being on steroids all the time. So, balancing some of those is part of the question.
I will tell you, the supplements or stimulants are a whole other set of medications with their own set of side effects as well. So, I tend to avoid them, because most people don’t want to take yet another pill. It’s another pill where we’ve got to figure out what if that causes side effects, what are we gonna deal with? So, I try and work through it with either therapy or see if it’s drug related before I go to adding in additional medicines. I don't know about you.
I agree. I think the one thing out there that a lot of people don’t realize is that activity actually improves fatigue. I have a lot of patients that tell me, “I’m just so tired, so I just sleep and take naps, and I don’t really want to go for a walk.”
I tell them, “In Houston, it’s hot and gross half the year.” I say go to the malls, go early in the morning, but walking even 15 to 20 minutes a day can actually improve your fatigue. So, it’s talking to your doctor about the non-medical ways of actually improving fatigue.
Question from our in-person audience?
I’m Sharon Young. Hi. My husband has had multiple myeloma for six years. He’s doing very well. He’s in complete remission, and we’re very happy about that, but he is stage III kidney disease. Is there any research going on with that?
So, let me ask the question in a way of staging myeloma and maybe answered it in terms of how important is staging with respect to patients once they’ve been treated—Dr. Patel?
Sure. So, I think staging of myeloma is definitely important as we talk about high risk versus standard risk. How are we gonna continue therapy? Do we just do Revlimid maintenance? Do we do three-drug maintenance? That does make some differences.
But I think with the kidney question specifically, a lot of my patients who don’t have high-risk disease can still have kidney involvement and not have—either be on dialysis, not be on dialysis, but have some residual kidney disease where the kidneys don’t filter as well or their disease gets completely back to normal or kidneys get back to normal.
The biggest thing is once the damage is done, it’s really hard to fix it. What’s really important is to prevent it from getting worse. What I tell my patients, especially if they’re going to the community for their treatment but they’re coming to see me every three, six months is anytime anyone starts a new drug or supplements or anything you’re thinking about doing, make sure it doesn’t affect the kidneys or that you have to dose reduce.
So, Revlimid is one of the big ones. If your kidney function is getting worse, we have to decrease that Revlimid dose. There are a lot of antibiotics and things like that. It’s more knowing what to do to help those kidneys from getting worse. If you have high blood pressure, keeping that controlled, other things that affect the kidneys is the most important part.
I would add I think it’s important and I’m sure you guys have this as well—to find the right nephrology partner to work with. So, 10 or 15 years ago when we started using bortezomib pretty on in the treatment approach, there were patients on dialysis who were coming off of dialysis. We couldn’t get the nephrologists to stop dialyzing them.
Once you push the dialysis button, it just keeps going and going and going. They had creatinine that were better than my creatinine. At one point, we said, “Stop going and just see us twice a week and we’ll check your kidney function for you.”
Then over time, people got used to the fact that you could reverse renal failure in patients with kidney damage, especially with aggressive therapy. I think you’ve got to find the right partner nephrologist who can help guide you in terms of dose reduction and what to do proactively to reduce the risk of stage III CKD getting even worse or other things along those lines.
I think that’s really important—nephrologists, cardiologists, pain management doctors, especially at institutions like MD Anderson can all become part of your health team and all have good information to help you compensate with what’s going on.
Dr. Lin, a question was asked by Debbie, “Is monosomy 13 by itself a high-risk marker?” So, you might explain what monosomy 13 is and then I’ll ask the doctors whether they consider that high risk or not?
Sure, basically, each one of us have 46 chromosomes, one from mom, one from dad.
Keep that mic in front of you.
So, usually, those are two. So, we call it deployed. When there is only one chromosome 17, it’s called monosomy 17. So, in that situation, essentially, there’s a loss of p53 because p53 is on chromosome 17. So, that’s why people take this as evidence of deletions of p53 gene.
Now, here I just want to say something else—when we look at the chromosomes—that’s why we look at chromosomes in addition to FISH. FISH tells the gene, right? Chromosome tells the whole chromosome and also other chromosomes.
If you have myeloma that has complex cytogenetics, which means you have loss of chromosome 17 in the context of many other normalities, then it’s more like to behave more aggressively versus just a simple isolated finding. So, monosomy 17 essentially means only one copy and the other copy is lost.
So, I might have misspoke. The question actually came in regarding monosomy 13.
Oh, monosomy 13, okay—so, monosomy 13 is a long story. So, from the very beginning, the Arkansas group actually found, along with other groups, that deletion of 13 is the poor prognostic factors and one of the four prognostic factors.
So, nowadays, we do studies to identify this particular—I think it’s still listed as one of the adverse. I think with the new drugs and other things, I think we have to look at this more probably in a different light. What do you all think about that?
So, monosomy 13 in the context of FISH occurs 50 percent of the time in newly diagnosed myeloma. So, when it’s identified in FISH alone, it has no implications in terms of adverse prognostic factors. The French have shown that very nicely in a randomized trial.
When monosomy 13 is seen by routine cytogenetics, karyotypes, the old-fashioned pulling out chromosomes one by one, that is a surrogate for highly proliferative myeloma, because 85 percent of myelomas will have a normal karyotype. 15 percent will have an abnormal karyotype. So, we use not just monosomy 13 but any karyotypic abnormality as suggesting there may be high-risk disease present.
That’s a very good point because the deletion of 13 is an early event, so to speak. So, when we do FISH, we can actually find that in MGUS, smoldering myeloma, and active myeloma. So, that’s why Dr. Lonial says that it’s by karyotype, which means looking at the chromosomes, the karyotype. When we see that, that’s considered to be a risk factor.
Thank you. I’ll remind online folks to send questions into firstname.lastname@example.org. I want to take a question from an audience member here that I saw had her hand up.
My name is Nancy. I actually have a two-part question. I’d like to know what your opinion is on maintenance therapy for a high-risk myeloma patient, which would be me, who’s been MRD-negative for a year and nine months now in light of the fact that I’m currently being treated for treatment-related MDS? That’s part one of my question.
Why don’t we take that before you get to part two. Dr. Patel?
Sure. So, high-risk myeloma, we’ll start with that first—what we usually do is triple maintenance post-transplant or a clinical trial, one or the other. We know that actually does put more pressure on that high-risk myeloma to stay down. Normally, if someone is MRD-negative but more their numbers, their serum protein and immunoglobulins and light chains are all so low usually around 18 months after, sometimes we’ll start taking one of the drugs off.
So, steroids, usually we decrease or take off. Then if I’m on KRD, for instance, we might go to regular maintenance depending on what high-risk feature it was.
Taking off the K.
Taking off the K and just doing Revlimid but individualized depending on what that high-risk feature was and what’s happening. In terms of MDS—I actually do have a lot of patients with MDS and myeloma. Sometimes you could potentially have both diseases. Older patients have a little more predilection for both versus treatment related.
So, transplant, Revlimid—we know the numbers are small, but it can happen. I do have patients with that. It just depends on what treatment you’re getting for the MDS. If you have high-risk disease, in general, I try to keep my patients on some type of myeloma treatment. I do use a lot of daratumamab for my MDS patients because it usually doesn’t affect the other drugs like azacitidine (Vidaza) and things we use from that side.
So, it’s making sure that you’re treating both diseases. Sometimes we might have to treat the MDS a little bit more. Sometimes, we might have to treat the myeloma a little bit more. But for me, my leukemia doctors treat that.
So, we work together to make sure that we’re not causing problems with the two drugs and making sure the toxicity is gonna be okay and then making sure both diseases are being watched and treating them together.
And then the second part of your question?
Well, with the explosion of new drugs to treat myeloma, are there any studies being done to determine which treatments might have a lower risk of developing severe adverse outcomes like treatment-related MDS?
I think the risk of MDS, if you look in large series, is somewhere around 3 percent to 5 percent. If you look at the risk of second cancer—when we looked in the smoldering ECOG trial, where patients were randomized to observation versus treatment, there was MDS in the observation arm.
There’s a certain fraction of the secondary adverse events you’re describing that are gonna happen whether or not you go on treatment. There’s another fraction that’s gonna increase slightly with any treatment you use. That occurs across all of oncology. Yes, I think as we get better and better at describing the treatment types, those rates will drop.
The rates of secondary MDS in the lenalidomide (Revlimid) maintenance trials were somewhere around 5 percent to 7 percent depending upon what your treatment was. If you look at our thousand-patient RVD induction transplant and maintenance, it’s about 3.5 percent. What’s the difference? We didn’t give continuous. We gave three weeks on, one week off, whereas the other trials gave continuous therapy.
So, I think there are subtleties that we’re doing to try to address that. Some of that is that whatever gave you myeloma in the first place can mess with other cell lines as well. So, that risk is gonna be there no matter what.
I have a question from the online audience. We often get it in out support group as well, where we have patients that were diagnosed just with MGUS or diagnosed with smoldering, don’t fit intermediate or high risk. So, essentially, their doctors are saying, “Don’t treat it. We’ll just watch and wait,” which can also be interpreted as a watch and worry.
So, I’m curious, how do you address those patients, Dr. Patel, in terms of telling them, “We don’t really want to ttreat you now. We want to monitor you,” versus in the patient’s mind, they might be thinking, “Why don’t we hit it hard and hit it early and take care of it?” How do you address that?
Like I said before, we’re one of the few cancers where we can find something early and you don’t treat it, because the question is in the end, our goal is to help—my goal is to help my patients one, live longer and two, not have side effects.
If I start treatment early, I’m not gonna help you live longer because I’m gonna cause resistance to start and I might give you toxicity now, because I’m giving you chemotherapy. Even Revlimid, which is pills, it does cause some fatigue. It can cause clots, other things.
If I’m actually gonna make your quality of life potentially worse but not give you benefit, then it doesn’t make sense. That’s why we are looking at trying to find that right patient population to start early.
So, Dr. Manasanch, my colleague, who did the video earlier, she has a study looking at patients with MGUS and not high-risk smoldering myeloma and looking at quality of life without therapy and observation, same thing. It’s normal to be anxious.
Every patient on there is very anxious, has high levels of stress. It’s because you know there’s something wrong and then people think, “It’s a ticking time bomb. I don't know when it’s gonna happen. Is it tomorrow? Is it ten years from now?” So, talk to your doctors about the projection of what we really think is happening. And talking to psychiatrists or behavioral therapists.
I talk to my patients a lot, but if it’s really high stress levels—I have some patients that can’t sleep at night and can’t go to work because they’re so worried about it, we need to address that. We do give a medication for anxiety or depression and it takes care of it. We actually are able to go back to standard living and just watching it again.
So, it depends on how bad it’s affecting your life. But talking—as we talked about social work, our social workers are very good about the second that we see that high anxiety level, someone is gonna come talk to you and we’ll get you to the right people to make sure we put it in perspective.
Good. Very good. Any final question from an in-person audience here? We’ve answered all your questions?
Hi. I’m Sabrina Guillory, diagnosed in 2016. One of the team that helped to save my life is Dr. Patel—thank you very much. My question is you mentioned anxiety, whether you’re a watch or no watch, people will still have those issues.
My question is like if you’re on drugs and you’re continuing to have drugs and you’re talking to people who have different levels of medication they’re receiving, me being very concerned about different drugs for anxiety and those kinds of things, how do you know whether you can back off on, say, for instance, a Revlimid and go from a 10 milligrams to a 5 milligrams?
How do you know whether—you mentioned whether or not normal symptoms, whether it be a headache or diarrhea, those kinds of things, are they the result of this—of your drugs or regular life because we’re aging and we’re having issues? How do you not wait to long to the point that cancer is in your skull all the way down to your back when you can’t walk because you’re saying it’s nothing.
I guess I threw a lot at you. But I’m really trying to find out—some people I talk to, my neighbor right here, he’s caught his right away and mine, I couldn’t even take a step. How do you catch these things?
So Dr. Lonial, you want to take a stab at that and then we’ll wrap it up.
Yeah. I think we are starting to get to a point where we can talk about screening. We know the incidence of plasma cell disorders, MGUS, smoldering, and myeloma is higher in an African American population than it is in a non-African American population.
We’re trying to figure out what the benefits of screening are because I think the anxiety issue you raised, diagnosing a whole lot more people, especially if you’re using mass spec instead of regular SPEPs will triple the number of people diagnosed with MGUS. What do we do with all those folks? How do we tell them what it means and allay some of those concerns they have?
Those are all things that our community is starting to struggle with right now because I think we don’t want people to be diagnosed late in the game. Recall that even diseases like breast cancer where there’s incredibly aggressive screening, there are still patients that are diagnosed with stage IV disease. I don’t think you’re gonna be able to completely eliminate that.
But I think being in tuned to how your body is and what’s different—almost everybody that I’ve talked to that was diagnosed with late stage things like fractures or things along those lines, they all said, “I had something for six months and I let it go.” Maybe you’re not like that, but a lot of people were. So, paying attention to your body and listening to those signals, I think, is the best we can do right now.
I want to wrap it up by thanking a lot of people here, but it starts off with thanking the doctors. Starting with Dr. Lin, maybe you can provide us with a one-sentence hopeful message for myeloma patients and care partners in the audience.
I think I’m very optimistic, given the fact that over the past 20 years seeing what I have seen, really, we are very hopeful this will be a curable disease.
I think to me, one of the most exciting parts about this is the partnership available in the myeloma community. We have patients and advocacy groups, industries at the table. The FDA is at the table. Academic institutions are at the table. That’s what’s really allowed this field to move forward and why everybody wants their drug to be tested in myeloma. That’s a great thing for patients but it’s a great thing for the entire community because it really shows that cohesion.
An,d Dr. Patel?
I think when we start talking about not just quality of life but now, how can I make your quality of life the best? That’s a huge step. There are so many new things, not just myeloma or anti-myeloma, but there are so many other avenues that we’re looking at making our patients’ lives better. And that’s huge.
I think with quality of life improvements and the idea that we’re having more studies for quality of life, it really teaches us as your doctors, “Okay, these are the things that are important for my patients, I’m talking about SPEPs, MRIs, but I’m not really getting to what’s really causing some major issues in your life even if you’re on protein zero right now.”
I think that part is for myeloma, especially it’s really encouraging that we’re talking about your life, not just the myeloma, right?
I also want to thank our patients and caregivers, especially in the front row here—Carl, Merlin, Beth, Tom, our social worker. I clearly need to thank our sponsors for the event—Janssen Biotech, Karyopharm, Takeda Oncology, Foundation Medicine, and our partners, Myeloma Crowd, MD Anderson, and CanCare.
I’ll remind you all to fill out that survey that’s in your packets because that’s how we improve these programs and the online audience will also receive a link to that survey as well. For more expert interviews and patient stories throughout the year, this program will be available on patient power in about a week or so.
I want to thank all of you in the in-person audience as well as our online audience.
I’m Jack Aiello, but I’ll plagiarize a phrase from Andrew Schorr, who’s founder of Patient Power by saying to remember that knowledge can be the best medicine of all. Thank you very much.