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Path to Empowerment: Multiple Myeloma | Treatment

Your Path to Empowerment | Myeloma: Treatment from Patient Empowerment Network on Vimeo.

Navigating treatment for multiple myeloma can easily become overwhelming. What education can you receive prior to treatment or what impact will a specific treatment have on your daily life? Hear from a panel of myeloma patient advocates who share their personal experiences, advice and various resources.

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Transcript:

Lisa Hatfield:

Okay, hello and welcome to our Path to Empowerment Living with Multiple Myeloma program here at Patient Empowerment Network. I am the myeloma Empowerment Lead here at Patient Empowerment Network. My name is Lisa, and I’m also a myeloma patient diagnosed back in April of 2018, I started having a pretty significant pain in my hip about one or two years before I was diagnosed, how to spine x-ray didn’t show anything in about five months later, went in for an MRI and was diagnosed with a large plasmacytoma that had eaten away a part of my spine, I have been fortunate enough to have care at MD Anderson. I was able to go down there, both for my spine and for my cancer. I met with the radiation oncologist immediately upon going to MD Anderson, who had me go through eight sessions of radiation. My treatment consisted of the radiation and then spine surgery to support my spine because my spine was compromised and close to the tumors close to my spinal cord, all of that was followed by… I met with myeloma specialist, Dr. Karina Patel at MD Anderson, and she wrote my prescription and orders for chemo to be done back in my hometown in Boise, Idaho. 

So, I came home for six months of chemo, and I had it every week for three weeks on one week off, and my chemo treatment consisted of KRD, which is carfilzomib, Revlimid and Dex also known as Kyrpolis, Lenalidomide and Dexamethasone. I did have that for six months on, like I said, three weeks on one week off. Had a great response. My last treatment that I had, I followed that up by going to Seattle to have stem cells collected and was also re-staged, my cancer was re-staged in Seattle was MRD negative, ten to minus five, but at that point, I opted to wait to have my stem cell transplant until first relapse, and since then I’ve been on maintenance therapy for about three and a half years, Revlimid also called Lenalidomide was on it every day until about a year ago when I was given one week off after three weeks on and for the past 10 weeks, I’ve been completely off of maintenance therapy due to side effects of getting progressively worse, including neuropathy and digestive side effects, so that is my history with myeloma, we are very fortunate today to have two other patient panelists, Jim and Sheri, who will introduce themselves. 

I’m going to back up for just a minute, people like to know the type of myeloma we have, I have kappa light chain only myeloma, which means I do not have an M spike, I’m followed with the free light chain that shows kappa light chains in my blood and also a 24-hour urine, that shows Bence-Jones proteins in the urine. So, kappa light chain only, my cytogenetics, I feel like I have to share my zodiac side too, but my cytogenetics are translocation, 11, 14 and monosomer 13. So we’ll move on to our patient panelists, welcome them. Sheri, she’s a support group leader for the International Myeloma Foundation here in the Treasure Valley and Boise, Idaho. So Sheri, if you could just introduce yourself, please, and explain your history with myeloma, the treatments you’ve had, current status and type of myeloma. That would be great. 

Sheri Baker:

I’m Sheri, and I was diagnosed in October 2011 with IgG Kappa myeloma. We found my myeloma because through blood work to check, just kind of more of a routine check, it was discovered that I had kidney failure, and my kidneys were only functioning at 8%… Normally should be 100% or close to that, so 8% kidney function. Didn’t know why. It took a couple of weeks and a bone marrow biopsy to figure out that it was because of myeloma. So, IgG Kappa, but no cytogenetic markers now, high risk markers, just standard, normal myeloma, but it did attack my kidneys versus my bones, very minor minor small lesions that I had. Anyways, that was 2011, in October, within a couple of weeks, I started dialysis and started my first treatment, which was in 2011, they weren’t really doing doublets and triplets very much, so it was, well, a doublet, if you want to consider Velcade, which is bortezomib plus Dexamethasone. So, I was on those two, and I did four cycles from October to the end of December to get me ready and see if I had a good response for a stem cell transplant. 

I had a stem cell transplant in March of 2012, I got a very good partial response for my stem cell transplant, still had a small M-spike, but because of the dialysis and my kidney issues, I decided not to do maintenance therapy, I’m really the only or the standard maintenance therapy was Revlimid, and I know Revlimid can be tough on your kidneys, so I decided after researching it and talking with my doctor not to do maintenance therapy, so I was off of therapy for two years, but my numbers had started to increase. So in April of 2014, when faced with having to go back on something, I asked my doctor if I could do Velcade again because I’d only done it for four cycles, really only about two months’ worth, and he looked into it and said, yeah, so that’s what I did for six years, Velcade as therapy, maintenance therapy, if you want to call it that, but I did it solid three weeks on, one week off for six years, when that started to quit working and I started looking at changing treatment again. I changed to Darzalex Faspro, Revlimid this time at a low dose and Dexamethasone. 

And it has been two years since I started that treatment. I’m now on monthly Darzalex, and I stopped the Revlimid in February because again, lower blood counts and it could be tough on your body, and I stopped the dexamethasone as well, so I’m only on Darzalex once a month, and it seems to be holding. It did finally put me into a zero M spike, complete remission, which I really hadn’t been in 10 years, so that’s a good thing, and I’m still holding my own with that right now, so that’s my story. And I was able to get off of dialysis. I was only on dialysis for two years, and my kidneys recovered just barely enough to stop dialysis and they have slowly improved over the 10 years or over the eight years, and my kidney functions generally around 25% right now. So that’s where I’m at. 

Lisa Hatfield:

Thank you. Well, thanks Sheri. Jim, if you would please introduce yourself and give a little bit about your history and the treatment that you’ve had. 

Jim Bond:

I am James Bond, and I’m the real James Bond, I’m not the movie actor. And my beautiful caregiving wife, Kathleen, if she were here with me, you would believe that I am the real James Bond. But I was diagnosed in 1992, so that was 30 years ago, and I was at stage three with Kappa light chain, like you, Lisa, and I’ve had some treatments during those 30 years, and I can recap those for you. It’s pretty easy. The first 10 years I had three transplants, there were no current day modern drugs for myeloma available, and I was one of the pioneers in the clinic trial that got Velcade approved. In fact, it saved my life when I was told to go to a hospice and I was lucky enough to get in the trial, and that was up in Boston, away from our home, and home run got saved and Velcade got approved, and I’ve really not been in danger with myeloma since then, although I have been in a total of six clinical trials, including Revlimid that you’ve been on Lisa and help that one get approved, but ever since, Velcade my myeloma has not been life threatening.   

Another highlight of the treatments that you asked her to sell is that I did get treatment-related leukemia, and they’re not… Positive why. One of my transplants, I had to have full body radiation as part of the protocol, and I took some other drugs like Melphalan and we all have to take for transplant, but those were leading suspects of what may have caused the treatment-related leukemia. But I was very, very fortunate and they were able to find an unrelated donor, and I haven’t matched my stem cells, and I had a fourth stem cell transplant over a decade ago, and that put the leukemia in remission and where I remained today on both cancers side note to the last allo transplant, my four transplants break down two autos and two allos, but my last allo was from a woman living in Germany and it kind of explained to me why ever since that transplant, I’ve had this urge to go to October Fest. 

More seriously, I’ve had some serious side effects, the most prominent of which is graph vs host disease from the other person cells, which affects my skin, my gut, and surprisingly the surface of my eyes. I had to get special contact lenses that I have to delicately put in, take out every day to return my sight to normal, but it’s worked out really well.   

Lisa Hatfield:

Thank you, Jim. And I’ll just provide a quick reminder that this program is based solely off of our patient experiences and should not be substituted for medical advice, so please see your physician or any qualified healthcare provider if you have any questions about your medical conditions including myeloma. You do have an opportunity to ask questions of the patient panelists at the end of this program. If you use on your zoom, there should be two little buttons one a Q and A function and one a chat box, submit your questions there and are behind the scenes, producer will be watching for those questions, and our patient panelists are available to answer those questions at the end of our program, just that reminder, but with our medical disclaimer.  

So, we’re going to jump right into our questions that we have now for the patient panelists, and Jim, I think I’ll start with you, you already established some of the treatments that you had, but sometimes when I go to our support group meetings for which Sheri leads this group here locally, people will say things like, I really wish I had known this about treatments. Is there any one or two things that you wish you had know looking back now, that you wish you had known going into any particular treatment that you do know now?

James Bond:

Yes, there are a couple that stand out and they’re the subject not only of my book and our talks, but I started doing episodes, four-minute episodes on YouTube, and one of those episodes is on my experience with using steroids, which one or both of you mentioned Dex is one of the components to one of your treatments. So, dexamethasone is the most powerful steroid that I use, and it was required with getting me ready for my first second, third and fourth transplants, and it was also a steroid that was used for a while I did do maintenance before I got leukemia. And the thing I wish I had known about steroids from beginning is after I had a hip or one of my two hips replaced, the hip surgeon told me, Jim, you cancer patients are higher risk for needing to get a hip replaced. Something called avascular necrosis because of the long-term use of steroids that you’re required to do. Well, when I found that out. It’s been 15 years ago. I started challenging my doctor, I said, look, can we try that maintenance that you’ve got me doing, but do it without the prednisone steroid, and he balked at that because that wasn’t the way that they were doing it. 

But I said, how can we work it out? Because I’d really rather not get the other hip replaced, lower my risk, and we agree to something in between, and he said If you’re willing to come in here every six weeks and monitor your blood, that I’d be happy with you staying on no maintenance. So that’s really what I’ve been doing. And I know that earlier on, I probably would stop the prednisone earlier on, there’s nothing I can do about the dex required for getting me ready for the transplant. That was part of my story. But that would have been helpful to know.  

 Lisa Hatfield:

So, one of the questions too that somebody asked me a while back, had been diagnosed for a few years, gone through induction, stem cell transplant, lived in the Boise area, had never seen a specialist. Can a person, if they haven’t seen a specialist from diagnosis or can they seek advice of a specialist anywhere during their myeloma journey?   

Sheri Baker:

Yeah, I think so, for sure. For the first, probably two and a half years, maybe. I didn’t consider seeing a specialist because what I was doing was pretty straightforward, I had standard risk myeloma, and I was a newbie, I was a rookie, and I just kind of went along with what my doctor said to do, and I don’t think I did anything wrong; I don’t think I made a wrong turn; I should have done something different. But the more I started reading and researching, the more I realized that being with someone who deals with just myeloma and a large number of myeloma patients, because like Jim said, everybody’s myeloma is different, so when you see someone who’s dealt with a variety of myeloma cases and can see the differences, it’s helpful, so that’s when I saw… It was probably closer to three years in my journey before I saw a specialist, and then I didn’t have… And I saw that specialist, I saw her for a couple of years, once a year, kind of a thing, and my myeloma was stable. Once my myeloma changed and I wanted to see somebody closer to home, relatively speaking, I changed specialist because it was easier to see and travel to, and again, I knew my myeloma was on the rise again, and I wanted to get a specialist opinion, because there are so many choices of treatment and this was just two years ago. 

And the landscape of myeloma had changed drastically, so I really wanted to see a specialist and find out… Now, what do I do now that I’m making a change? And so, I think anywhere in your journey, if you’ve never seen a specialist, you can certainly see one, and I know as a support group leader, I’m very happy that I have convinced some members of my support group to see a specialist because their myeloma is getting tricky to handle… And they need someone who has seen more cases and has a better idea of where, what they should do at that point. 

Lisa Hatfield:

How did you choose your myeloma specialist? 

Sheri Baker:

It was funny, my husband said, we’re going to go see a specialist, we’re going to see one of the best, so we kind of looked at the top 10 list, we went off of a website that had done a lot of research and ranked enlisted specialists and this specialist at Duke, my son was living in North Carolina and we thought, Well, she’s one of the best. We can visit him and we can go to the specialist, so that’s why we chose to go all the way across country and see a specialist. 

Sheri Baker:

When I changed specialist, one of the reasons was my son had moved back to Idaho, I didn’t need to go to North Carolina anymore, and I had met this specialist in person, really liked him, had a good rapport, my husband met him at a patient conference and really liked him as well, and he said, we should see if we can switch. And see him now because it’s closer, and I just really like him, so that’s how I made my decision there. 

James Bond:

One of the questions on the homework was, so what about access to treatments? And I’d like to say something about that. We had to pull up stakes at the drop of a hat and relocate 600 miles from Cleveland, Ohio to Boston, Mass for this all important turned out to be a Velcade trial and we were able to do that financially. I had a great job, I was still working, great insurance. And my wife and I looked at each other and thought, what about people who don’t have the resources to do this? And my wife is a 40-year volunteer for the American Cancer Society, and she’s become a real leader with them, including the national board of directors. Well, she pointed out that that’s why the American Cancer Society has over 30 hope lodges around the country, where cancer patients and a caregiver stay for free while they’re being treated typically for an out-of-town treatment they can’t get at home. 

And that’s really good information for people to know because even though there’s only 30, there are a lot of cities and states in our country, the American Cancer Society has a relationship with at least one hotel chain where they can help with very inexpensive accommodations while you’re out of town for cancer. So, the American Cancer Society, 24 hours, seven days a week, support line. It’s really some place to look, if you’re having trouble with finances on getting out of town. 

Lisa Hatfield:

Thanks, Jim. And you mentioned something too, I think we’re all on board with our feelings that seeing a specialist is critical on your myeloma journey at some point, however, that requires the financial means to be able to do that, to be able to travel, to pay any co-pays or out-of-pocket expenses that you might accumulate from that, or even when we went down to MD Anderson, I was scheduled to go to appointments for five days, we stayed down there for a month because I had to have an emergency spine surgery. All of those are unexpected expenses, so I just want to say if anyone has questions, as they’re watching this feel free to contact me. I have an email, cure4mm@gmail.com. It’s the number four. I won’t know all the answers, I have a lot of great resources, including Sheri, who leads our support group to help try to find resources for people who are seeking a second opinion or a myeloma specialist. Even if it’s just once during your myeloma journey, please reach out because there are resources out there, whether it’s through the IMF or the LLS, the Leukemia Lymphoma Society, there are resources, it’s critical to seek out the advice of a specialist at least once during your myeloma journey. 

So just wanted to put that out there. And Jim, I do have another question for you. I did read your book, I have it right here. Thank you for doing that is a very easy to read book and it provided a great perspective on because myeloma is incurable, how can we live with this for 30 years, and still live our lives while going through treatment after treatment, and you had great insight and inspiration in your book about that. So, thank you for putting that out there, but it brings up a big question that I had, and I still have… You had talked about the plasmacytoma that had developed on your head and had radiation, and I think it was that point, I have ear marked in the book, one of my big… I’m terrified when I ask a question of a doctor, because I’m afraid it’s going to appear that I’m questioning their expertise, if I disagree with the treatment or if I’m uneasy with the treatment. I have a hard time saying, hey, I think that this might be a better option for me. Well, in your story, you had during this time of this plasmacytoma, you mentioned that you were on a maintenance drug, your doctor, one of your doctors wanted to add a second drug, I believe, to your maintenance regimen, just to make sure that everything was knocked down as much as it could be your abnormal proteins for increasing, you felt you just want to increase the dose of the one drug you were on rather than adding another drug. 

My question for you is, you did approach your position, you had a method of doing it… How did you do that? 

James Bond:

Yes, that was the most contentious I’ve ever been with my myeloma expert, Paul Richardson. He and I and my wife are really good friends, I mean that. We’re talking close friends. So, I was at that point where I was on a little bit of a maintenance drug, I think it was Revlimid and my protein started to go up, and Paul wanted me to add Velcade to it. Well, my strategy is I wanted to hold on to Velcade in case my life was ever in danger because it was one that really saved me when it was, and so I resisted and I said, Paul, let’s just try increasing the dose. And he resisted, and there was a little contentious over the telephone, finally… And here’s the key, we have had a really good relationship with Paul’s oncology nurse, Debbie. Debbie is now retired. Debbie said, Jim, let me talk to you privately. She and I got on the phone primarily without Paul, and she said, Jim, here’s the thing, you’re not going to convince Paul based on the myeloma knowledge, he wins that argument every time because he knows it. She said, what you can make progress on is what you’re comfortable with, and if you come out of it at a standpoint say Paul, I’d be more comfortable trying to increase my dose and give it a month and see how that goes. 

That worked like a charm. And so, it was a study nurse who got involved, saw that she had two people who were kind of dug in and listened to her closely, and that really mitigated what could have been a difficult situation. Here’s the really surprising thing and great thing is then after I had the dose, and he had me do another this and another that to make sure there was no other problems in my body, and when the protein went down at the higher dose, I thought he might be a little bit remissed, dumb luck or not my call worked out. First thing out of his mouth on the phone was Jim, good call. Good for you. So that’s the kind of guy he is. He puts ego aside and he just wants to do the right thing for his patients. Same Doctor called me at 8 O’clock at night. I was having real difficulty with that fourth transplant, the one for leukemia, I was there for 75 straight days, and he called me one Sunday night and assured me I’d make it through. That meant a lot to me at the time and it still does and that did help me get through with the thing. 

So, our relationship with doctors is really important, and you’re right, not to want to rile your relationship with your doctor, but the words I’m more comfortable with go a long way with me and my doctor. 

Lisa Hatfield:

That’s a great piece of advice going in, especially for those of us who don’t want to question the medical expertise to say something like that, I’m more comfortable with this, and then they can consider it, and I think it’s a team effort, it’s a collaboration when you’re dealing with the lifelong disease like myeloma it has to be a collaborative effort. For the best outcome, so that.   

James Bond:

We look at it like you know the science and the biology, and that’s great, but we know 30 years of history and we know our own risk tolerance, and by putting those two together and collaborating, like you said, was… I think we get the best to answer. 

Lisa Hatfield:

Yeah. Great, thank you. So, Sheri, I know that you have gone through… Well, you had dialysis, there are all kinds of treatments that are involved with myeloma, we have radiation, we have surgery, we have chemo, some people have dialysis, stem cell transplant, so focusing on the chemo aspect, because I believe every myeloma patient will have chemo at some point. Some of the questions that come up with that, or what is that like when you go and did you… When you were first diagnosed, were you able to do some of your own prepping to develop questions, and did somebody prep you? Did they provide any education? What should it even look like when you went into the chemo… What did it feel like when you walked in there? I just figured when I went in, it would be people laying in bed getting sick, they’re all going through chemo, and nobody would have any hair, 80% of the people had hair still, so what was it like for you when you first started chemo? What kind of education did you get and what did it feel like just walking into that chemo suite the first time? 

Sheri Baker:

Well, it’s funny because it was almost 11 years ago, and it’s very different than it is now, there was kind of no real walking you around the chemo Suite and what not in my case, I think it’s because I saw my doctor downtown in Boise, but because I live in Meridian, just outside of Boise, I went to the facility that was there because it’s a little closer to home for most of my treatments, but I liked my doctor who was downtown, so I wanted to go there so anyway, I think because I was back and forth between the two, maybe.

But now I know that they have a program with new patients where they walk them around, they show them the chemo suite, they show where you’re going to get your treatments, and so it’s very different from when I first went in 11 years ago. In fact, when I went in, I really didn’t know what… I knew what the name of the treatment was, but I did not know anything else. I didn’t know how it would be administered, nothing. And they had just started in our hospital here locally, they had just… And I think most of the country had just started switching over from Velcade, which was given in the IV form in the beginning for years to the sub-q injection. So, when I sat down to get my first chemo, because I didn’t know any better, the nurse started an IV in my hand, but then somewhere along the lines in my head, I was like, I thought this was going to be a shot, but I just didn’t know what they were doing… And so, I asked her, I said, aren’t I supposed to get this as a shot in my arm at the time, I thought… 

And she’s like, oh my gosh, I am so sorry. And ended up taking the IV out, and to this day, I still tease her about that. But yeah, I feel like I was a little unprepared, I don’t think the hospital necessarily did a good job of preparing in the beginning, I think they have gotten much better about that, but I do always try to… I try to help the hospital from a patient perspective of, you really need to do this when I was a brand-new patient, this is what I would like to have had. I would like someone to have told me about a support group, I would like them to have told me what my treatment was actually going to be like on that first day, and I think they’re getting better about that, but a lot of that is on us as being your own best advocate, you know, like Jim said, you know they know the myeloma stuff, but you know your body, you know yourself, you know what you’re comfortable with, so you have to ask, at some point in my six… Six years of getting Velcade after I relapsed the first, probably two years, I got the shot in the back of my arm because that’s what everybody did, but then I read about it online and… 

Yeah, you can’t trust everything you read online, you have to be careful. But I read that it was… A lot of people were getting it in their belly, that it was originally intended to go in your belly, and I asked about it and they’re like, Well, yeah, we can do that, and now most people I know at the clinic do get it in their belly, so it’s just a matter of educating yourself and asking questions, and don’t hesitate to ask a question, that’s the only way that you will get answers, it’s the only way you learn, and sometimes it helps educate the doctors and nurses around you as well. 

Lisa Hatfield:

Thanks. So do you think of a patient… A new patient is going into chemo, it’s really uncomfortable. Do you think they would be able to ask, hey, can I have a tour of the chemo suite the week before or a day before my treatment begins. Do you think that would be a reasonable question?  

Sheri Baker:

I think it’s definitely a reasonable question, and obviously cancer centers across the country, I have no idea how they do it, but I know ours here locally is getting better about doing that, it’s a process now, before your first treatment, they’ll walk you around and show you everything so you have an idea of what to expect and you’re comfortable or as comfortable as you can be on your first treatment day. 

Lisa Hatfield:

I have one more or two more questions I’m going to have… I wanted to ask really quickly, both of you can respond to this Jim, we’ll start with you, during all of your treatments, have you had any unusual side effects that nobody was able to explain or that you hadn’t heard of prior to starting that treatment?   

James Bond:

Yeah, probably the emotions got away from me at one point, I lost my temper when I shouldn’t have, and I attribute that to everything about that. I don’t know if it’s just steroids or just the treatments or what… But I like to ask questions, I’m not afraid to ask questions. And I read the signals to my family that I needed to do something differently, and I asked my oncologist who had to become really good friends with here in Cleveland and he recommended a professional and I sought his help, and he sat me down and he gave me some really good advice that I still live by. So, you know, that’s something I didn’t expect and I don’t know if I could have prepared for it, but just being flexible in letting your ego leave at the door step and just realize, hey, you need these people’s help to get yourself going, and just accept, in my case, accept that I’m not as young as I used to be for one, 73 is not 43. And there’s certain things I just can’t do anymore. So, you just got to kind of roll with that, so I hope that’s of some value. 

Lisa Hatfield:

So, Sheri, I know you had an unusual side effect because we talked about it, it was to Revlimid, and I remember getting the same side effect early on in my treatment, I was a really, really itchy scalp in the middle of the night, scratching… And the pharmacist actually talked to, didn’t even know about it, so you and I talked about that, that was one of my unusual side effects that a lot of people didn’t know about. Have you had any other unusual side effects that even your providers were a little bit curious why that was going on, and you think it was from the treatment?   

Sheri Baker:

When I was on Velcade, I kept getting styes on my eye like right in my eye lash line, upper or lower. And we think that now that that… I’ve seen a lot of other people comment on Velcade, they have that as well, but at the time, doctors didn’t really seem to know that that was a side effect of the Velcade. I think that’s why it’s so important when you have a little… I shouldn’t say little, any kind of side effect or something that you have and you should ask and you need to report it to your doctor and kind of report it to the pharmaceutical company because if these things are happening with other patients, but nobody tells the pharmaceutical company then they don’t know that’s a side effect of that particular drug, so that’s probably one of the ones that we weren’t sure that and a lot of cramping, hands, feet, my face, that’s what led me to get blood work in the very beginning when I first got diagnosed was an excessive amount of cramping in my legs and feet, but after I started Revlimid, I had a lot of cramping, cramping, like my face would cramp, cramping in my hands, and we lowered my dosage of Revlimid and that did help, but I don’t know how many people get that to the point where I couldn’t even drive the car, my hands cramped up so bad that I had to pull over until the camping stopped because both hands were cramping, so those are probably the more… 

 I don’t know if they’re unusual, I think a lot of people may get them, but not an easy thing to solve, an itchy scalp…That is crazy. That is crazy. I just saw someone who just quit Revlimid and then got the itchy scalp and she asked, has anybody gotten that when they quit the Revlimid because she goes, now that I’ve been off of it, I have a really itchy scalp, like you say, the cancer itself is different in everybody… And then everybody’s side effects are just slightly different, so… 

Lisa Hatfield:

I think you’re right, that’s why I like talking to other patients because these unusual things the doctor does not know what it is, but you talked to somebody else, like I had that same exact thing happen. You’re right, I reiterate what you say let your provider know when you have side effects and maybe even let the pharmacy or a pharmacist at the cancer center now so they can report that accordingly.  

So that’s my last question is one takeaway that both of you have, whether it has to do with the emotional or mental health challenges of having myeloma or just dealing with even more acute things like, oh my gosh, I’ve got a new treatment, how to deal with that emotionally, one take away that each of you has to help my myeloma patients as they go through the treatments with myeloma. Sheri, do you have one thing that you can leave everyone with or talk about the emotional challenges that you have, how you’ve dealt with them?   

Sheri Baker:

You know, I think that I am different than most people in the beginning, it was a devastating diagnosis. When they tell you three to five years, that’s devastating, because then you start… I was only 49 so you start thinking about all the things that you thought you were going to have in your life, watching your kids get married, having grandchildren, retiring together, living out your… traveling, doing all these things you think you’re going to do, and when you get that first diagnosis it just throws everything in the trash can and so the first six months to a year probably, I focused a lot on that, but then you start to adapt and you’re living with it, and it’s not as bad as what you thought it was going to be in the beginning, and it’s a cancer that we will live with the rest of our lives most likely, hopefully 30 years like Jim. I’ve made it almost 11 years, which didn’t think would happen in the beginning, so now… It’s just part of my life, it’s like, I hate the term, that it’s a chronic illness. I don’t like that it is still cancer, it is not just a chronic illness, but yet that is how we live with it every day, like if you have diabetes, you get up and you take your insulin or whatever, you take every day for diabetes, same thing I get up every day, take a whole host of pills, go once a month for a treatment that keeps me going, it’s just a part of my life now, but being a patient advocate has made it a little different where it is always in the forefront of my mind. 

Everywhere I go, everything I do, I think about it from the support group standpoint or for me as a patient standpoint or whatever, but I think I like Jim, I do that maybe I need to not think about it so that I don’t get burned out. But I’m one of those people that has always had a positive attitude about it, and I feel like for me, it’s been easier to deal with than what a lot of other people go through, which is one of the reasons that I’m glad I started the support group to hopefully help people deal with it a little bit better, but yeah, it definitely changes what you thought he… And Jim was young when he was diagnosed, it changes what you think your life… The rest of your life is going to be like… You know, at least that little map you had in your head of how things would go, but I am just… I don’t know, I just deal with it, I think easier than a lot of other people, it’s never been out of my head to say to have a positive attitude, and I know people get sick of that, you got to have it. 

It’s all about the attitude, but that’s just been easy for me and that’s how I’ve always been… My whole life has been on the upbeat side. So, it’s been lucky for me. 

James Bond:

Thank you for being a support group leader, you help many others, they’re closing thought All The you with us. When we have this incurable deadly disease, keep making your long-term plans don’t feel like cancer will get in your way; you have to change a plan so be it. Keep making your plans. Live your life. You can do it. Hang in there. 

Lisa Hatfield:

Thank you so much to both of you for those positive words of wisdom, keep making your plans. The first thing I did when I found it was telling my husband, we have to update our will, so we move forward with our plans for travel and that type of thing. Great advice, and I really appreciate that. So, thank you to both of you so much for your information and for sharing your experience. We’re going to move on now to the Q and A section, so I’ll remind everybody who is watching this to use the little buttons at the bottom of your screen, the Q and A function, the chat function, and our producer will be forwarding those off to our patient panelists. Thank you.  

Well, welcome everybody to our live Q and A session, as you can see, it’s a different day, that was a pre-recorded session, so I’m going to welcome back Jim and Sheri, and they will be on to answer questions. We have a number of questions on the Q and A, we have a number of questions that were submitted via email and during registration, we’ll get through as many of those as we can, I just want to send a reminder to everybody that we are not…   

Your healthcare providers, we’re just strictly speaking from our own experiences, patients, we encourage you to talk to our healthcare team, and even if you get one little piece of information from this program and you’d like to take that back to your doctor… I’m sure they would be willing to talk with you about that. So please remember that as you’re asking questions to questions a little bit more general, and to understand that we can’t answer medical questions directly, but we will speak with our own experiences to your questions. I’m going to jump right in, and one of the questions that was submitted during registration will start with that, this point will be for sharing, and again, she can’t necessarily speak to the efficacy of treatment, but she can speak to come experience. So, the question is what other effective treatments are there for those in multiple myeloma remission, besides Revlimid. If you could just review again, you were on Revlimid for maintenance therapy. I assume this person is referring to maintenance therapy. What other medications have you been on? And again, she’s not endorsing these medications. She’s just strictly maybe giving you some ideas to talk to your doctor about. So, Sheri? 

Sheri Baker:

Yeah, in the beginning, when I decided to start treatment again, because I didn’t do maintenance right after my stem cell transplant, but when I decided to start treatment or needed to start treatment again, I was on Velcade. My husband always called it being on treatment, not maintenance, because it was three weeks on one week off, and I did that for six years, so that along with dexamethasone for probably two of those six years. That is a treatment option, and it’s typically an upfront treatment option for people, and it can be… I know quite a lot of people who are on Velcade as a maintenance program, there’s obviously Revlimid. And I’m on Darzalex now, which again was given when my cancer markers and numbers, my M spike was increasing and I needed to change treatment, so I was given Darzalex, Revlimid, and Dex, and I’m still on Darzalex now as by itself, if the Revlimid had not lowered my blood count, so drastically and they weren’t bouncing back on my weeks off, I would have still been on Darzalex and Revlimid as maintenance, but now I’m just on Darzalex maintenance. So, those are some options that I’ve had experience with. 

Lisa Hatfield:

And that’s great to hear because I know that kind of the go to for maintenance is Revlimid. That’s what I’ve always been on, so I don’t have experience with anything else, and as long as you were talking, Sheri there was a question that you were going to answer live about what you would do differently if you were diagnosed, could you answer that question for the audience, please?  

Sheri Baker:

Yeah, you know, years ago, before I was on Revlimid, in my head, I said If I had it to do differently, again, I do two things, one, I would have consulted with a specialist right from the very beginning, and through that, I probably would have gone ahead and gone on Revlimid maintenance after my stem cell transplant, even though I was on dialysis, because a couple of years later, speaking to a specialist, she said Revlimid can be dosed accurately to not totally affect your kidneys. So, looking back, I would have seen a specialist and I probably would have done some sort of maintenance therapy right after to give me a longer time before changing treatments. But now that I’ve had 18 months of experience with Revlimid and the way it was for me, by lowering my blood count so badly, I think now that I’m okay that I didn’t do any maintenance for two years, so that’s kind of a tough choice, but I would definitely have seen a specialist right from the get go. 

Okay, that’s good advice. Jim, how about you? Is there any piece of advice, if something you might do differently if you were diagnosed today? 

James Bond:

Very little. We try not to look back, we try to stay in the moment as best we can. I think all cancer patients, including me when into it with the idea that the doctor and nurses, they really had all the answers, we really should follow everything they say, but as I got more and more experience along with my wife… I guess looking back, maybe I could have spoken up earlier. For example, I haven’t done maintenance in 10 years, and that’s not the preference of my doctors, that’s my preference, and I’m willing to go ahead and get my blood checked every six weeks as something to make us kind of reconcile with the two views, but they’re just human beings like the rest of us, and I think just opening up and becoming… Developing a good relationship early is really helpful and it worked out, but maybe focusing on that more at the front would’ve helped.  

Lisa Hatfield:

Well, thank you for that. So, we do have a lot of questions about side effects and how to deal with those. I wanted to make a comment, we did have a question that came in via email, are red blotches on arms and legs and the chronic post side effects of Revlimid 5 milligrams taken while in remission. And just to answer this a little more generally, I think that your doctor may tell you, I told me that any medication can cause almost any effect that it’s hard to know which effects come with which medication. From my own experience, I did develop red blotches on my arms and on my hands, and they actually got swollen, and I did look at their website, it’s Bristol Myers Squib now formerly Celgene that manufactures Revlimid. That is a common side effect, both the rash and also the chronic cough, something you should definitely talk to your doctor about though, it’s always nice to kind of see those images… I actually was going to print a picture of what the rash looks like on my back, I also got it on my back, but I wasn’t sure my producer who’s also my boss would be super thrilled with me putting that you know on a live program.  

I know from my experience; my doctors did say that that rash on my arms and on my back and on my torso was caused by Revlimid. And when it comes to side effects, another comment I’m going to make about clinical trials is when clinical trials are done, they’re looking at the maximum tolerable dose of a medication not the minimum effective dose. So, for anybody who’s experiencing side effects, it might be helpful to ask your doctor if there is a lower dose that you can take of that medication and see how it goes, and we’re not saying that’s the best idea for you, but working as a team with your doctor, he or she may have an idea of how to reduce to that dose to see if the side effects can also be reduced with that. So, I’m going to move on to another question about, have either of you had different experiences with foods or supplements? I see that Sheri said that she does use… I don’t know how to say it, Curcumin. I don’t know if that helps. I don’t know if there’s any… There’s a study being done on that right now at clinicaltrials.gov.  

If you look it up and you can just search for that. Jim or Sheri, have you found any… Have you used any foods or heard from your providers that certain foods may help with not only the cancer, but also with side effects? Jim, do you want to start with that one?  

James Bond:

Sure. One point during one of the drugs I was taking, I also developed cramps, my cramps would be at night in my legs, and I was trying to sleep, and when I brought that up to my nurse and doctor… My nurse said, Jim, this doesn’t work for everybody. It might not work for you, but if you try just having a little bottle of tonic water next to your bed, the quinine that’s in tonic water, if it’s okay with your system, that may help and… It really did help. And so, for a long time while I was taking it, whatever drug it was, I’d take a few steps of tonic water and it made the cramps go away, so that was… That was one. I’m not sure I could think of another one. Why don’t you go ahead, Sheri.    

Sheri Baker: 

Yeah well, pickle juice is another thing, talking about foods or things that may help with the cramping, but I know that there are certain drugs when you’re on them, certain treatments when you’re on them that you maybe should avoid… I think Velcade is one, you shouldn’t be drinking green tea or grapefruit, it supposedly lessens the efficacy of the drug. Asparagus is another one, but those are all things that I would just maybe eat in moderation. Having kidney issues, I’ve always had to watch what I eat in relation to dairy products, and anything that has phosphorus in it, nuts are high in phosphorus and all dairy most dairy is high in phosphorus, so my kidneys don’t process it well because of the reduced function. But as far as the actual myeloma, any foods, obviously a Mediterranean diet, Whole Foods, anything like that’s better for any of us cancer or not, but in particular with the myeloma… No, I don’t know. Anything that’s said, eat this and you’re going to do better or don’t eat this because it will make your cancer worse.  

Lisa Hatfield:

And one thing I would comment on too is if your cancer center has an Integrative Medicine department, that might be a great place to go visit to ask them that question too, and I know they have other therapies like massage and acupuncture. 

We had a nutritionist or dietician for a while, I’m not sure if she is still there, I know they have one in the cancer center itself, so that might be a place to go and look into that too. Moving on to another question that’s a little bit different, is there’s somebody who’s asking online about wanting to know a couple of people have asked about a cure, if there’s an algorithm for a cure. And I probably will ask Sheri that question in a moment because I’m not certain yet. I’ve heard some things from different webinars, but there was another question on that same one,  is it possible to have bone marrow transplant or CAR T, I’m kind of skimming along here for storage stem cells over two years or five years or ten years longer? I think that that person is asking, can those stem cells be used? I’m guessing that… I do know from my specialist, she said that she has used stored them cells thirteen years after they were collected and they were found to be viable and it was a successful stem cell transplant, so that would be something else to ask your doctor is if you have had those stem cells collected stored, how long are they viable for and are they useful if you need a time company that they can best be viability.  

Sheri Baker:

I don’t think those can be used for CAR T though, because those are… Those are different cells. They’re harvesting T-cells versus stem cells.  

Lisa Hatfield:

Yes, you’re right. So, thanks for that clarification, Sheri. Yes, they may be used for stem cell therapy or even for… I think there’s something called stem cell boosting, if somebody needs to have their stem cells boosted or transplanted. Again, something to talk to your doctor about, which should be great. This is a really quick question; I think it’s a solid… I don’t know the answer to that. I don’t know if either of you do, but can a myeloma patient be an organ donor? Do you know that either one of you?   

Sheri Baker:

I don’t think so, especially because myeloma being a blood cancer and it’s systemic running through our body, I think even if you were at MRD negative, I would not think… And I don’t know 100%, but I would think you’re not eligible. 

James Bond:

I don’t even like the mosquitoes to bite me. 

Lisa Hatfield:

Jim, when I was on Revlimid, I had three years, no mosquito bites, I think they knew not to bite me, so I’ve been off of it now for a couple of months and I have gotten eaten alive by mosquitoes just saying, maybe they know something too.  

James Bond:

Maybe, they do.   

Lisa Hatfield:

Go ahead, Jim.  

James Bond:

Well, in terms of supplements, checking with your medical team is vital, no matter what it is, wherever I mentioned about tonic water, check with your doctor first because I was amazed when I had a cold years ago, and I probably reported to my doctor is through cold medication I was taking… And he said, Jim, don’t do that without asking me that contains zinc, and zinc is bad for your kidneys, and my kidneys are okay, but they’re not great, and so that was a good lesson in things. Even if it sounds faint, it could not be hurtful. It’s wise for us blood cancer patients to check with our medical team first. 

Lisa Hatfield:

Sure, yeah, good idea, Jim, thanks for that. Sheri, there are a couple of questions that have come in via email during registration, and now I see one that’s on the chat. If people don’t have a local support group or group to go to, what are some options for them to find a virtual group or to find a group to attend?  

Sheri Baker:

Yeah, so I’m involved with the International Myeloma Foundation and our support group who prior to covid was meeting in person, but we’re now meeting virtually, sometimes maybe a hybrid where some of us are in person and some are virtual. So, if you go to myeloma.org, you can look up support groups, and you can find support groups that are meeting virtually. I mean it’ll take you to their different websites, which will tell you whether they’re meeting virtually or in person still, and so you can join those from anywhere, you just send an email to that support group leader and tell them you’d like to join their next meeting, and they can send you the link. Also, Health Tree Foundation has all virtual support groups, and they are done geographically, they’re also done whether you’re smoldering myeloma or MGUS, different people who are on different types of treatments, so they have virtual support groups based on the Mountain West, Southern California, several in Florida. 

People who have patients with young children, they both, International Myeloma Foundation and Health Tree have Spanish-speaking support groups, so there’s a lot of options out there for virtual support groups and you can join from anywhere in the country.  

Lisa Hatfield:

Thank you. Okay, that’s great advice on that, trying to skim through some of these questions also, so there were a couple of questions also, that came up regarding using novel therapies and not going down the stem cell transplant. So autologous stem cell transplant, Jim has had an allergenic transplant, which is not very common anymore, the stem cell transplants have been the standard of care, I also opted to delay mine. There was just at the most recent ASCO, Dr. Paul Richardson, who Jim knows from Dana Farber, completed the determination trial, which had two arms to it, and I’ll just go briefly through this because we’ve had several questions with two arms, one was BRD plus stem cell transplants plus Revlimid maintenance until progression. The other arm was VRD, I can’t remember now if there’s consolidation therapy, I don’t know if you know that Sheri, but no stem cell transplant, Revlimid maintenance until progression. Basically, the findings on that were really interesting, they found that progression-free survival increased for those patients was great for those patients who did have the stem cell transplant, however, that did not translate to overall survival benefits. 

The one caveat to that was for patients who reached MRD negativity after induction, they saw the same progression-free survival, it was similar for both the transplant and the non-transplant arm. It’s a really interesting study. Dr. Richardson explains it really well, I just listened to Sheri had mentioned Health Tree, so if you go to Health Tree’s website and look up, I think it’s called myeloma radio or something. Jenny Ahlstrom from Health Tree did an interview with Dr. Richardson about this determination trial, really interesting. For those of you interested in hearing more about stem cell transplant versus no, stem cell transplant., that would be something I would recommend. We’ve several questions about that. Okay, so we’ve got just a few more minutes left. We’re going to save these questions and we can reach out to you via email if you provided an email address, I do want to look up the organ donor question and might try to post that somewhere because I’m curious about that myself. We’ve got a few, too many questions to answer.  

Sheri Baker:

Lisa, can I say something real fast? There was at least one question about African-Americans. I would like to say that both International Myeloma Foundation, which is at myeloma.org they have a program called M-Power, they’ve done presentations, you can find those on myeloma.org about myeloma related to the African-American community, and also health tree also has another…  

They also have an initiative, again, specifically for black Americans, well, just African-Americans in general, no matter where we live in the world related to myeloma, and so my advice would be, go look at those and definitely, just like you do, Lisa and Jim and I both do you have to be an advocate for yourself. You have to be your own best advocate when it comes to your cancer, no matter what your ethnicity or nationality is, and so the best thing you can do is speak out, but in particular for that subset of myeloma patients, go look at those websites for more information.  

Lisa Hatfield:

Great, thanks Sheri. Jim, there were a couple of questions that came up for you, and I will mention that your book is called The Man in the Arena. it Could be ordered via Amazon. There’s a link that I think was put in the chat or in the Q and A, but one of the questions, I think it’s relevant because this does come up with some patients been treated for myeloma, the question is if you get… What types of leukemia did you get? What was your second cancer that you developed? Somebody’s asking if that was MDS? 

James Bond:

Well, it started out as MDS, and the progression from MDS to the type of leukemia, it was AML leukemia. The progression from MDS to AML is detailed in the book, I would like to make sure you understand the profits from the book go to cancer charities, so the book was only written to try to give some people some out there. 

Lisa Hatfield:

Yeah, alright, thank you, Jim. And I know there is some concern when people go on these therapies something, they need to talk to their doctor or they’re specialists about what are the short-term side effects of every medication, and also ask what are the potential long-term side effects? That’s something that I’ve always been cognizant of. and a little bit worried about, so something to not only ask the question about, but to keep an eye on too. So I just want to comment too, I’ve had a couple of people ask about chemo brain, the brain fog, the kind of fatigue and one person mentioned clumsy feelings, so when it comes to chemo brain, I have found… We can mention that to our providers and the nurses, and that it’s just something you’re going to have… But that’s hard to hear that what I have found is that when I talk to other patients, when I go to the support groups, when I have met patients like we’re doing here, and hear their stories, it almost makes me feel like I’m not alone, so when people are going through that. And there’s one person here who I saw comment on other myeloma patients who seem to know exactly what I’m describing. 

That is one of the benefits of connecting through these webinars and through some of the support groups, is we kind of understand each other, it helps us understand or support each other because we understand each other.  

James Bond:

One of my doctors gave me great advice in that regard, he said to me, Jim, you have to remember you’re older now than you used to be. So, guys, it’s not all cancer.  

Lisa Hatfield:

That’s true, that is true. So I’m going to put my email address here; this is super unprofessional and my engineer husband would be dismayed because I’m not very text-savvy. This is my email address, cure4mm@gmail.com It’s probably backwards too… Sorry about that. I put that out there, just so that if you do have questions, you could email me. I may not have the answer an oftentimes don’t have the answer, but I usually call Sheri if I don’t because she can find the resources.  Please feel free to email me directly if we have your email address. Like I said, we will get back to you on your email if you have questions, I think we’re going to have to close up this Q and A, I have so many more questions I’d like to answer. It sounds like a lot of people have the cramps, different side effects, how they deal with that, is that common? We’re going to close this up for now, we are hoping to have another one of these programs in about two months. Jim and Sheri, thank you so much for sharing your stories and your experience. 

For all of you at home, thank you for joining us, I love hearing stories of other people, that’s why I do this, I love to hear their experience, I hope that even if they’re just like I said before, one little piece of information that somebody can take from this, and ask their doctor about which we want you to do… Please do so we all have a hope for a cure. I wanted to talk about an algorithm for a cure Sheri I said that… I don’t know if there actually is. Everybody is different. There’s nothing definitive that I’ve heard Doctors say, well, if you’re 10 years out without treatments one, Doctor said Well I would call that a cure, so it just depends on who you’re talking to. I have high hopes for a cure and I hope it’s soon for all of us patients dealing with this, so thank you again. Thank you for joining us from home. We really appreciate you taking time out of your day. Have a great afternoon.  

Path to Empowerment: Multiple Myeloma | Testing

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Living with a multiple myeloma diagnosis exposes you to many tests such bone marrow biopsies and often creates feelings of anxiety.  Hear from a panel of myeloma patient advocates who share their personal experiences, advice, and various resources in addition to myeloma expert, Dr. Douglas Sborov who was able to answer several questions during our Q&A segment.

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How Can We Address Noted Disparities in Multiple Myeloma?

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What can patients and healthcare providers do to improve health disparities for myeloma patients? Expert Dr. Joseph Mikhael explains the communities that need more outreach about myeloma and those he views as vital to educating about myeloma risk and symptoms for earlier diagnosis and better health outcomes.

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Transcript:

Dr. Joseph Mikhael:

Well, I have to tell you, this is a very personal issue for me, disparities in multiple myeloma, and I have the privilege of being involved in many programs and platforms to try and address this. And like with any major consideration, there isn’t a simple solution, it is going to take a multi-fold solution that has many parts. The first part that I think is critical is engagement of our communities, whether it is the Black community, the Hispanic community, even though in more rural areas or patients uninsured, we really require a kind of an engagement that’s real to build trust, to build confidence, this is stemmed from years of mistrust and understandably, so that we have to re-build.

I try to do that personally in my practice, but advocate for it on a larger sphere. Secondly, I want to empower my patients to learn and for communities to learn, whether someone has myeloma might have my load or as already myeloma, and I don’t have it might have it, or do you have it? Those patients need to be educated about myeloma so that they can understand who’s at risk and facilitate a more early and a more accurate diagnosis. Thirdly, I believe very much so, in educating the primary care world, the majority of patients with myeloma are still diagnosed by a primary care physician. They may ultimately see a hematologist-oncologist to confirm that, but the suspicion comes at the primary care level. And so I’m involved in multiple programs to educate primary care docs to think about myeloma, as I like to say, “If you don’t take a temperature, a patient won’t have a fever, you need to look for it.” And so if there are certain signs or symptoms that may include bone pain, significant fatigue, signs that we see like protein in the urine or a low hemoglobin or kidney dysfunction, these things need to push us to look for multiple myeloma. And then lastly, to look at disparity as an important area of work across the whole board that we need to better access to have better access for clinical trials and for the therapies that we know will benefit our patients, and that’s on us as physicians. But it’s also on the community at large, our regulators, our insurance companies.

Those are the kinds of things that I’m working on so that we can make a long-standing difference and really start to reduce this currently awful disparity in multiple myeloma.

 

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Transcript:

Dr. Joseph Mikhael:

I have long believed in patient advocacy, that we need to make systemic changes, we need to make changes within the healthcare system. But our patients are partners alongside of that, and there are many ways in which patients can be empowered to ensure that they have access to the best treatment possible, and this really begins with their own belief and understanding that they are part of that solution. This is…as one of my patients always used to tell me, I am taking ownership of this disease, I don’t want to own it, but I’m taking ownership of this disease. And that initial thought process, I think is important, secondly, to educate oneself about it, there is so much to learn, and there are a lot of difficult ways that it can be difficult to navigate resources. But there are great resources available because patients who are informed and understand their condition more can definitely facilitate the process to their best care. Thirdly, we’ve come to appreciate that having access to a specialist is very important, multiple myeloma may account for only 1 to 2 percent of all malignancies, and so very often, it may be difficult for a community oncologist to keep up with all of the details, and so…

Now, perhaps more than ever through the pandemic with access to telemedicine, patients can seek out an expert opinion. I prefer to call it an expert opinion over a second opinion because it doesn’t mean the first opinion is wrong, it just allows further education, further understanding to enhance one’s care. And then, of course, lastly, to be involved in community and other efforts that really push us towards better access for treatments for patients and better education are reducing the stage of this disease, so we can all provide the best care possible for our patients. 

Peer-to-Peer Advice for Newly Diagnosed Myeloma Patients

Peer-to-Peer Advice for Newly Diagnosed Myeloma Patients from Patient Empowerment Network on Vimeo.

Myeloma Network Manager Honora and Myeloma patient Barry stress the importance of finding a myeloma specialist as soon as possible, finding a support group, being comfortable with your healthcare team. Remaining hopeful and positive throughout your diagnosis is key.


Transcript:

Honora Miller

I’d like to point out the importance of finding a myeloma specialist as soon as possible in your myeloma journey. There have been studies done, I can’t point to the specifics of one at this moment, there have been studies done that have shown that myeloma patients who have a myeloma specialist have a better long-term outcomeWhen you get a myeloma specialist, they’re dealing, they’ve dealt with hundreds, perhaps thousands of myeloma patients, and because of the complexity and variation of the myeloma with the disease, really you need to have that level of knowledge. So that would be something that I would encourage somebody newly diagnosed to find, to be referred to a myeloma specialist, possibly not as their primary provider, but as a secondary guider of the process. I do have that. So, I have a second doctor who I meet with quarterly, say, who is at a different institution who guides my myeloma treatment, and he’s a myeloma specialist and he handled my stem cell transplant. 

Barry Marcus

I think it’s very important to have a support group. Somebody who is newly diagnosed, I would counsel them to seek out a support group now it’s hard in the time of COVID, the support group that I was in, quit meeting because of it. I’m right now in the process of trying to find another one that meets virtually, and I would highly recommend that it feels good to connect with people who are going through the same things that you are, and maybe get varied perspectives on different issues around myeloma.  

I really want to emphasize how important it is to get information and to feel comfortable with your health team and the care that you’re getting and pursue that. Don’t feel like you’re worried about offending anybody, because in the first place, probably you’re not. In the second place, it’s your life. If you die, they go on to the next patient. And you’re done. 

 Honora Miller

True enough. True enough. For new patients, and I’ve talked to quite a few, having hope is something that is very important and having a positive outlook, and when you get this sudden diagnosis, it’s very scary and overwhelming. But I want to encourage people to remain hopeful, to stay positive, this is an as yet incurable cancer, but it’s being treated more and more like a chronic disease, and there’s never been a time as good as now in terms of the number of treatment options and new drugs that are coming down the pipeline, so it’s a time of great hope for myeloma, and I want to emphasize that for people because I do think that it’s important for people to hold on to that. 

Barry Marcus

I couldn’t agree more. That’s well said.

What Multiple Myeloma Populations Will Benefit From Telemedicine?

What Multiple Myeloma Populations Will Benefit Most From Telemedicine? from Patient Empowerment Network on Vimeo

Which multiple myeloma patients will benefit most from telemedicine visits, and which patients can get more from in-person visits? Dr. Joseph Mikhael shares information on how to ensure the best myeloma care even during pandemic restrictions and how in-person visits have adjusted to limit COVID exposure risk.

See More From the Myeloma TelemEDucation Empowerment Resource Center

Related Resources:

 

Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

What Are Best Practices for Multiple Myeloma Patients Utilizing Telemedicine?

How Will Telemedicine Impact Multiple Myeloma Clinical Trials?

 

Transcript:

Dr. Joseph Mikhael:

When it comes to making a decision around, do I need to go into the clinic or can I do this as a telemedicine visit, of course, that has to be discussed with the healthcare team, but a few things we’ve learned through this pandemic.

And perhaps one of the most important things we’ve learned through the pandemic is that controlling one’s disease, controlling one’s myeloma is critical to protecting people against COVID, sadly, many of our patients who have struggled the most with COVID are those who had very active myeloma. So, we emphasize the importance of making sure that one continues to receive the best myeloma care possible, and very often that is going to involve an in-person visit, not only for discussion, but, of course, for the actual receiving of treatment. Secondly, I think it’s very important for us to note that we really have not seen significant spread of COVID or almost any infection within our hematology-oncology clinics, we’ve taken particular precaution around this area. So, this is different than someone maybe going out to a more public place where the risks may be higher. And so, we try to reassure our patients that coming into clinic actually is really not a high-risk situation and, in fact, perhaps lower risk than ever in light of the fact that many of our waiting areas and places where we have patients have been restructured and have fewer patients because of telemedicine visits.

And then thirdly, and very importantly, whether it’s telemedicine or in-person, it’s really important to maintain open, honest, and clear communication with the healthcare team. And if that is felt that it’s being done to a certain extent in telemedicine, fantastic, but there are situations where it’s challenging and difficult and really must be face-to-face. And so I would want to encourage my patients not to be afraid to go in to receive treatment and to meet with their healthcare team. These are generally very safe places that we take special precautions to ensure their patients can receive the best care possible.

Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

Are There Any Barriers For Multiple Myeloma Patients Using Telemedicine? from Patient Empowerment Network on Vimeo

Along with all the benefits of multiple myeloma care via telemedicine, there are some obstacles that providers run into as well. Myeloma expert Dr. Joseph Mikhael details his experience with telehealth barriers in caring for his patients.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Will Telemedicine Be an Advantage for Multiple Myeloma Patients?

What Are Best Practices for Multiple Myeloma Patients Utilizing Telemedicine?

How Will Telemedicine Impact Multiple Myeloma Clinical Trials?

 

Transcript:

Dr. Joseph Mikhael:

So there are several limitations to telemedicine, despite better technology and camera strength and Wi-Fi, and we’re removing all those distractions, it really is limited by not being able to physically be present with a patient, which means we can’t examine patients, which means we can’t hug our patients, I’m a hugger as an oncologist, I like to get close to my patients, and then of course, there are those things that don’t always convey themselves easily over a camera or a computer.

The emotion in the room, the tension, the fear, many of my patients experience fear being cancer patients, and so telemedicine can be very helpful when we have more straightforward follow-ups and questions, but initially building a bond with the patient and having very considerable discussions about one’s treatment and on symptoms, it is always going to be limited in a telemedicine capacity

What Are Best Practices for Multiple Myeloma Patients Utilizing Telemedicine?

What Are Best Practices for Multiple Myeloma Patients Utilizing Telemedicine? from Patient Empowerment Network on Vimeo.

What are some ways that patients and providers can make the most of multiple myeloma telemedicine visits? Dr. Joseph Mikhael shares things that he has found helpful in interacting via telehealth visits with his patients and how he tries to approach different types of visits.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Will Telemedicine Be an Advantage for Multiple Myeloma Patients?

What Multiple Myeloma Populations Will Benefit from Telemedicine?

How Will Telemedicine Impact Multiple Myeloma Clinical Trials?

 

Transcript:

Dr. Joseph Mikhael:

Well, the best practices for telemedicine are really going to depend on the nature of the clinic, the way the provider likes to interact with their patients, and the way the patients like to interact with them. I think one of the beauties of the multiple platforms we have is that we can leverage them, that beautiful connection that we develop between a physician or a provider and their patient, we can continue obviously not to the same extent that using electronic means, and so I’ve really tried to make sure that I don’t look at this as a half visit or as a partial visit.

I think psychologically is my first important tip that we look at this as another very important physician-patient interaction. Secondly, I try to make sure that my patients are comfortable with this modality, that we’ve had time to work through the technology, so we’re not worrying about who’s on mute, who’s not on mute, so that when we discuss things, we can discuss things properly, and that thirdly, we as much as possible, try to engage a full visit, whether a family member is going to be with the patient, whether a nurse practitioner, a nurse or pharmacist is going to join me on this side, that we really try to reproduce what we know works well in the clinic.

So, that the patient can feel comfortable so that they can be heard, because sometimes it’s difficult when you’re on the other side of a computer or phone to really be heard.

So psychologically, being prepared for this and getting into the specifics of making sure we’re comfortable with the technology, and then thirdly, really as much as possible, trying to reproduce that magic that we feel like when we have a face-to-face interaction.

Will Telemedicine Be an Advantage for Multiple Myeloma Patients?

Will Telemedicine Be An Advantage for Multiple Myeloma Patients? from Patient Empowerment Network on Vimeo

With the rise of telemedicine into multiple myeloma care options, unforeseen benefits have occurred along with those that are well-documented. Dr. Joseph Mikhael shares what he’s experienced in caring for his patients.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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What Are Best Practices for Multiple Myeloma Patients Utilizing Telemedicine?

Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

What Multiple Myeloma Populations Will Benefit from Telemedicine?

 

Transcript:

Dr. Joseph Mikhael:

The pandemic, both in the short term and the long term has really revolutionized much of what we’re doing in medicine, telemedicine is one of those areas. It’s, despite all the challenges that we faced of social isolation, it really has given us an opportunity to not only see patients who we may not have already seen but also allow us to develop a relationship with patients where we can determine when is it best and needed truly to be seen in-person. And when can we do visits by telemedicine, allowing the patient to have less travel time and the challenges of coming to the clinic and allowing us to keep our clinics limited to those patients that genuinely need to be seen face-to-face. So it’s really now been a wonderful adjunct to the way we care for patients, doing so continuously in a human fashion, but also leveraging the technology and that we can use for this.

Is It Possible to Achieve Health Equity in Multiple Myeloma?

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

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

See More From the Diverse Partners in Your Myeloma Care Program


Transcript:

Rebecca Law:

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

Diahanna Vallentine:

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

Dr. Sikander Ailawadhi:

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

Jenny Ahlstrom:

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

Dr. Saad Usmani:

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

Rebecca Law:

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

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

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

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

See More From The Myeloma Patient Cafe®


Transcript:

Jack:

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

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

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

Doug:

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

Jack:

Okay. Peggy, tell us about yourself.

Peggy Lindley:

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

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

Jack:

Got it. Nancy, tell us about yourself.

Nancy:

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

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

Jack:

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

George:

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

Jack:

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

Peg Burrell:

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

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

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

Jack:

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

Doug:

Yup.

Peggy Lindley:

I have.

Jack:

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

Doug:

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

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

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

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

Jack:

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

Peggy Lindley:

It is.

Jack:

What did you do when you got that?

Peggy Lindley:

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

Jack:

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

Peggy Lindley:

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

Jack:

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

Peggy Lindley:

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

Jack:

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

Nancy:

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

Jack:

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

Nancy:

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

Jack:

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

Nancy:

Yes. It was definitely effective for me.

Jack:

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

George:

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

Jack:

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

Nancy:

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

Jack:

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

Nancy:

Yes.

Jack:

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

Doug:

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

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

Jack:

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

George:

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

Peg Burrell:

Yes.

George:

We have?

Jack:

Oh, you had MRD testing?

Peg Burrell:

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

Jack:

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

George:

Probably.

Peg Burrell:

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

Jack:

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

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

George:

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

Jack:

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

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

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

Peggy Lindley:

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

Jack:

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

George:

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

Jack:

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

Doug:

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

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

Jack:

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

Nancy:

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

Jack:

How important it is for the patient to understand it.

Nancy:

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

Jack:

Patients need to ask questions.

Nancy:

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

Jack:

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

Peg Burrell:

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

Jack:

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

George:

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

Jack:

Nancy?

Nancy:

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

Jack:

Good. Peggy?

Peggy Lindley:

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

Jack:

I heartily agree. Doug?

Doug:

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

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

Jack:

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


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

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

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


Transcript:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cindy Chmielewski:
Hi, Melissa, welcome.

Melissa Vaughn:
Hi.

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

Melissa Vaughn:
Okay. Want me to go ahead?

Cindy Chmielewski:
Sure.

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

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

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

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

Cindy Chmielewski:
Right.

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

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

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

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

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

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

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

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

Cindy Chmielewski:
We talked about some drugs like gabapentin.

Steve Simpson:
Gabapentin, yep.

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

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

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

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

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

Jill Zitzewitz:
Yes.

Cindy Chmielewski:
Anybody else about neuropathy?

Melissa Vaughn:
Exercise, exercise helps me most.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cindy Chmielewski:
Okay.

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

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

Sarah Frisbie:
Yeah.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sarah Frisbie:
Yes, I did.

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

Jill Zitzewitz:
Yes.

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

Steve Simpson?
(? Inaudible.)

Cindy Chmielewski:
Melissa?

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

Cindy Chmielewski:
Okay.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Paula, how was your transplant experience?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cindy Chmielewski:
With the rash? Okay.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cindy Chmielewski:
Right.

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

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

Melissa Vaughn:
Very inspiring.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cindy Chmielewski:
Good.

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

Cindy Chmielewski:
Anyone else have some final words?

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

Cindy Chmielewski:
Paula?

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

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

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

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

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

Cindy Chmielewski:
Good. Steven.

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

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

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

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

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

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

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

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

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

Living Well With Multiple Myeloma – How to Maintain Emotional Equilibrium

How to Maintain Emotional Equilibrium?

Living Well With Myeloma: How to Maintain Emotional Equilibrium from Patient Empowerment Network on Vimeo.

How do you maintain emotional equilibrium when living with myeloma? Can meditation be a tool to reduce watch-and-wait stress? Can meditation be useful to a care partner? Lori Puente, of California, who serves as a care partner to her husband Dave Puente, a multiple myeloma patient, attributes meditation with helping her cope and maintain stability. Watch as Lori discusses why meditation is “vital” to making her an effective care partner. We will also hear from Danny Parker, who is living with myeloma, on how he uses meditation as a coping tool.