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Our Multiple Myeloma: The Relapse Journey

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Published on July 9, 2021

Navigating Relapse as a Multiple Myeloma Patient

Relapse is a reality for many patients with multiple myeloma. Watch as multiple myeloma patient and advocate, Lou Sears, and her husband and care partner, David Sears, talk with Lou's doctor, Al-Ola Abdallah, MD, of the University of Kansas Medical Center, about navigating relapse, including how to address concerns and strategies for effective communication, research, and treatment. They also discuss how communication between patients, care partners, and their doctors can develop trust and lead to better outcomes.

Support for this series has been provided by Oncopeptides. Patient Power maintains complete editorial control and is solely responsible for program content.

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Transcript | Our Multiple Myeloma: The Relapse Journey

Lou Sears: Hello. I am Lou Sears.

David Sears: And I'm David Sears, Lou's husband.

Graphic: Lou was diagnosed with multiple myeloma in 2013. After a stem cell transplant, Lou was in remission. Remission lasted 3 years.

Lou Sears: I found out that I relapsed in the office visit with the oncologist who was head of the transplant team, and we always would go over lab work. And that's when I was told, my numbers were showing that it was not working as well as it was. And that's when they started downgrading from stringent remission to… The next category down was partial, I guess, remission. And then it was, pretty much within three years it was, my numbers were totally out of what they would consider remission. And then that was when they started talking about other drugs or other therapies.

What Are the Realities of Relapse for Multiple Myeloma Patients?

Dr. Abdallah: Unfortunately, when a patient is diagnosed with multiple myeloma, the majority of these patients, even if they go to complete remission, they will relapse over the course of the disease itself. And we understand that the majority of the patients, after they relapsed, they will get very anxious under the fact that the relapse really is becoming more difficult to treat it back. Usually, it's shorter duration of staying in remission, and usually they will require more intensive treatment, maybe more difficult while they were on maintenance therapy prior to that. So, the anxiety usually get very higher for the patients with multiple myeloma after they relapse the first time, and the second time, and third time. Especially, they want to make sure that there's many options for this.

Lou Sears: I would look up ahead of time the names of drugs, the names of treatment possibilities, so that when we were there and Dr. Abdallah would start telling us about which ones he was thinking about for me, I would kind of be familiar with some of those names and hear about other people's experiences with them. So, I wanted to go into the meetings with the doctor knowing ahead of time a little bit, as much as I could understand, about those drugs and treatments. So, we would know what kinds of questions to ask. And after a meeting with the doctor and when we kind of had an idea of which one we might go with, I even researched more then. Because then I knew for sure which — I know he laughs because I'm always looking things up — but I learned more.

David Sears: And we always took a notebook, and I took notes. And the doctors, I think it's important to find a doctor who is willing to answer questions. Fortunately, our team has always been very willing to answer questions.

What Variables Are Considered When Discussing Treatment Options?

Dr. Abdallah: Also the route of the treatment that we give for these patients, seeing as some of these treatments are IVs, some of them are injections, some of them are oral. And patients also might have some issues of coming more often to the infusion and the clinics, especially if they live far away. And that's really important, some patients have maybe difficulty to take oral medications and they need more support. So, we really have multiple factors that makes that decision to choose the right treatment for these patients with relapsed myeloma. The anxiety doesn't come from any emptiness. It really comes from a fact that these patients really need better care and a better option of therapy, so we can move on to the next step of how we can get them in remission and keep them in remission for long period of time.

David Sears: The doctor always was very good in recommending treatment options. But the questions that I asked most frequently are side effects, what would be the effect that the medication is going to have on her daily living? What to expect in terms of how quickly the medication will take on the myeloma, so that the numbers begin improving. And just dosage, length of treatment, what the… the cost of medications. We just go through a list of questions that we've asked many times before.

Why Is Communication Between Patients and Care Providers Important?

Dr. Abdallah: Any patient who have to start new treatment, we always have to communicate well with these patients about two major things, the effectiveness of the treatment and the side effects. And I keep telling the myeloma patients, the main thing is to make sure that they tolerate the treatment well. We always try to make sure that they're educated about all these treatments and about the side effects. Some of these side effects will not be visible for them. They will not feel it. It's like blood workup, like white blood cells or blood level dropping down, or platelet counts dropping down or kidney function getting worse. So that's our responsibility as physicians, and as a team, to monitor that very closely. But some side effects are things that we can't see and observe. GI symptoms, cardiac symptoms, lung symptoms — and these all symptoms that if patients are feeling that they are new, they have to be educated about that. We always give them a lower threshold to call us and contact us in order for us to advise and to evaluate and make sure we have the right grading about how severe the symptoms are in order to hold the treatment or to readjust the dosage. That is the most important thing, especially the first two months when the patient receive the treatment. The first two months, in my opinion, is the critical months that will show exactly if the patient can tolerate the treatment, or they will need to adjust the dose or switch to a different option of therapy. We really actually offer every myeloma patient who comes to our clinic a clinical trial. And that's under our belief that multiple myeloma in the majority of the patients is not curable. And our goal is to, in the future, hopefully see a better option that can be a cure for myeloma. So, we try to advise the clinical trials, especially we're in a center that is well known, it's NCI-designated, and we have all the clinical trials available for relapsed myeloma. Every patient have the right to listen and to actually ask questions about the clinical trial and an importance of that and what arm they will receive. But also, they have the right also to refuse that clinical trial and go for standard of care.

What Have You Learned During Your Myeloma Relapse Journey?

Lou Sears: I think when you've been going through this like I have for eight years, you learn that probably, you're going to relapse. It's just a fact of life in most instances. It's very rare that somebody has really, really long-lasting remissions in something, but you go with however long you have, and you're thankful for the drug or therapies as long as they last. So that part of it, I think keeping a positive outlook, as far as knowing, in this day and age, there's probably going to be something else that you can go to.

David Sears: Hopefully. And of course, there are tears and it is stressful at times. But the doctors... It's very important for the doctors to be honest with you. And I think the team that we work with is very clear that the treatment that you're on is not going to last forever. And that's just the nature of myeloma. And that, to a certain extent, helps me to feel, just like Lou was saying that "What is the next thing?" Of course, I want to know what the next thing is right now, before we've even found out if the current treatment that she's on is working. I want to know what will come next when it stops working if it does. Now, I think also, there is that hope that the current treatment, even if she has to continue it for a long period of time, that it will be successful and it will last for a very long time.

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