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
