Relapsed Multiple Myeloma: What Every Patient Needs to Know (https://www.myeloma.org/videos/relapsed-multiple-myeloma-every-patient-needs-know)

Relapsed Multiple Myeloma What Every Patient Needs to Know 


Relapsed multiple myeloma can bring new challenges, but understanding your options can make a difference. In this video, Dr. Joseph Mikhael, Chief Medical Officer of the International Myeloma Foundation, answers the top Googled questions about relapsed myeloma in 2025. Learn about the newest treatments, how to recognize signs of relapse, what to ask your doctor, and how to find the right clinical trial. 


Questions Answered in this Video: 

  • 0:00 – Introduction  
  • 0:32 – What is relapse in multiple myeloma?
  • 0:54 – New treatments for relapsed myeloma
  • 2:20 – What are the signs that your myeloma may be coming back?
  • 3:31 – How long can someone live with relapsed myeloma today?
  • 4:44 – Why does multiple myeloma relapse?
  • 5:53 – What questions should you ask your doctor after a relapse?
  • 7:04 – How to find a myeloma specialist
  • 8:27 – How to join a clinical trial for relapsed myeloma 


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Video
View the transcript

Joseph Mikhael: 

Multiple myeloma relapse. 

Hi everybody. Dr. Joseph Mikhael here, chief Medical Officer of the International Myeloma Foundation. And my job today is to answer the questions that are most asked in these trending searches. And today they're all going to be related to multiple myeloma relapse. 

I probably should define relapse first, just so that we're clear. We've made huge advances in myeloma and when patients are treated for newly diagnosed myeloma, we know that now they're living longer without the disease coming back. But sadly, at some point the disease comes back and that's what we call relapse when unfortunately the disease returns and needs to be treated again. All right, let's get into our first searched item here. New treatments for relapsed multiple myeloma in 2025. It's wonderful that literally every year we see new treatments being developed in research and ultimately being approved by the FDA for us to use in the clinic. 

Last year we had several new ones and 2025 will not disappoint. We are awaiting almost any moment for several approvals of new treatments for relapse therapy in multiple myeloma. Number one is going to be belantamab mafodotin. So belantamab, sometimes called Blenreb, is an antibody drug conjugate, which means it hooks on like an antibody to the myeloma cell and then it's got an evil backpack that it drops in there to destroy the cell and it's going to be approved, we believe, in early relapse in the very near future. 

Number two is linvoseltamab. Linvoseltamab is going to be the newest bispecific antibody. These antibodies that hook onto one cell, in this case, linvo holds onto BCMA and also engages a T cell to destroy that cell. Now those are the two that Dr. Joe is going to predict are coming really soon, but there are more to come, so you're just going to have to subscribe to the IMF's YouTube channel to talk about more drugs that are coming down the pipe. 

Let's go on to search topic number two. Signs of myeloma coming back. This is a little bit tricky because it can be different in every patient. Most patients we detect that their myeloma has come back because we're following them so closely we see changes in their blood work before they feel anything. So if we're following their M spike or that monoclonal protein, we're constantly checking it and sometimes we see it come up before the patient feels anything. That can be a sign of relapse. Number two, sometimes we're taking X-rays on a regular basis, typically a PET scan, maybe sometimes even an MRI scan or a form of CT scan. And that may demonstrate some changes before the patient feels anything. The third way is unfortunately when patients feel it. They may feel fatigued. 

They may unfortunately break a bone. They may feel sick. And we discover that something is going on with their multiple myeloma. So as a patient, the thing to remember is you need to continue to follow with your doctor so we can follow that blood work, so we can follow those x-rays and try to catch it before you feel anything. All right, let's move on to search item number three. How long can you live with relapsed myeloma? Like we always say with myeloma, we call it multiple myeloma for a reason because it can be multiply different in every patient. Meaning we have some patients who sadly succumb to their disease within the first few years of their diagnosis. We have other patients now living for many, many more years. In fact, the latest prediction with the way we're treating frontline myeloma is that most patients are going to live more than 15 years. 

So even when it recurs with relapse, we have many of our patients that are living a long period of time. We just saw an amazing research report of the long-term follow-up of CAR T-cell therapy with cilta-cel, or Carvykti, where a third of those patients treated, and these patients had on average at least six prior lines of therapy, a third of them were still alive with no disease five years after that one treatment. So I want to be optimistic today about even though relapse means the disease has come back, we have more options than ever and more hope than ever to keep people alive, living longer and indeed living better. 

All right, let's move to the next search item. Why does myeloma always relapse? That's a really good question. And not always a simple answer. The most likely reason we believe that myeloma comes back in almost every patient is that even though our tests show that we've shrunk it down and almost entirely eliminated it, sometimes we just can't get rid of absolutely all of it. Sometimes we can't even detect that it's there, but it is there even in a small amount. And over time, that small amount grows and grows and grows and comes back. 

Sometimes we also think it may have to do with our immune systems that just can't keep those plasma cells in check and they become cancerous again and develop multiple myeloma. And that's one of the reasons why we feel it's so important as we treat patients to get that depth of response, what we call MRD or minimal residual disease negativity, where we can truly eliminate as much as we can measure because we know that typically means someone will remain in remission for longer and we can push the relapse even further out. What to ask your doctor after a relapse? This is a fantastic search item and really important. It's not just about you going to the doctor and they tell you, "You'll take it and you'll like it. This is what we do." 

You want to be a participant. You want to ask questions. You want to be informed. That's one of the reasons why we exist as the IMF, to have you informed so that you can have that conversation with your doctor, so that you can participate in what we call shared decision-making, where the two of you can discuss together, often with your partner or with your family, what is best for you. Now with so many options in myeloma, you want to be able to make the right choice for you. Key things to remember when you go to have that conversation with your healthcare team, to ask them, are you high risk or are you standard risk? Because that might influence the choice of treatment. Number two, is my disease growing quickly or is it growing slowly? Because that might influence the timing and the choice that you use. 

And then number three, and most importantly, what are all the options that we have? And work through each of those options and match it to what's best for you and the lifestyle that you want. All right, two left. Here's a question that comes out very frequently, which is, who is the best specialist to see for relapsed multiple myeloma? We know that many of us in this country and across the world really dedicate all of our work and practice to just multiple myeloma, what may be considered a specialist or an expert in multiple myeloma. But we also know that almost 80% of patients being treated for myeloma are treated in the community where there may not be a specialist. We want to help you with that. We believe whoever is taking care of you can give you the best care possible as long as they have the support and the network to provide the information that they need. 

You can reach out to us at the info line and we can help you learn where are specialists that may live near to you. Sometimes you can go for an expert opinion. Sometimes it can be a virtual opinion. Or sometimes even your doctor can communicate with them so that they know what is the latest in multiple myeloma. But be assured that the development of the relationship with your healthcare team is so important. It actually doesn't just make you feel good, it actually influences how well that you do. And so this partnership that we have between myeloma experts and the community oncologists is really a beautiful relationship where we support each other to make sure you're given the best care possible. All right, one last one. I know Rafi's getting bored with me here and he wants me to keep moving, so I'll get to the last one. 

How to join a clinical trial for relapse multiple myeloma? There is a great question. You often hear me talking about these clinical trials that have changed the way we treat multiple myeloma. We want clinical trials to be accessible to all. And you can go to clinicaltrials.gov, but typically you're going to come up with a list of 100s if not 1000s of trials, and it'd be very difficult to navigate it. So at the IMF, we've partnered with SparkCures to create a search engine to search for clinical trials that are relevant to you, and that may be even very close to you. If you go to myeloma.org/SparkCures, you'll find that search engine. So start your search and learn more about clinical trials that may be relevant to you. 

That's all I have time for today. Very impressed with the quality of the search that people have been making to try and figure out multiple myeloma and specifically how we treat relapse myeloma. All right, Rafi, bring it on. I've already said to you that myeloma.org/SparkCures is how you can search for a trial. But remember, this isn't the only way for you to ask questions. Yes, you can go to myeloma.org and type in your question so that maybe Dr. Joe will put it onto one of these videos. 

But you can reach out directly to us at the info line, at the number that you see here or at info line at myeloma.org. You can come in person. We have patient family seminars, community workshops, virtual workshops, literally every month of the year there's some kind of educational offering that you can attend in person or virtually to learn more about multiple myeloma. You can stay informed by coming to subscribe.myeloma.org. Sign up for our weekly newsletters, virtually. Our quarterly free quarterly magazine that you can receive to your door where you can learn about all the events that we have. And if our mission and our work has resonated with you, we would be honored if you could support us and you can learn more at donate.myeloma.org. 

Thanks everybody for joining me today. I hope these searches have helped you in your search for greater understanding of multiple myeloma because when you know more, you're more empowered. When you're more empowered, you're going to do better with this disease. Thanks very much. 

Thanks so much for watching. If you found this video helpful, please subscribe to the IMF's YouTube channel so you'll never miss updates in myeloma research, in education, and in support. In fact, if you want to learn more, here are a couple of videos you might be interested in. 
 

Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO

International Myeloma Foundation Medical Advisor 
TGen, City of Hope Cancer Center—Phoenix, AZ, USA

Dr Mikhael is a Professor in the Clinical Genomics and Therapeutics Division at the Translational Genomics Research Institute (TGen), an affiliate of City of Hope Cancer Center. He is also the Director of Myeloma research at the HonorHealth Research Institute in Scottsdale, Arizona. Dr Mikhael specializes clinically in plasma cell disorders, namely multiple myeloma, amyloidosis, and Waldenstrom’s macroglobulinemia. He is the PI of many clinical trials, primarily in relapsed multiple myeloma, and his other clinical research interests include pharmaco-economics, communication skills, and media relations.

Dr. Mikhael recently served as the Chief Medical Officer of the International Myeloma Foundation (IMF) from 2018 to 2026 – he now serves as Medical Advisor to the IMF to provide guidance and strategic input in areas such as patient education, health disparities, collaboration with partners, international research, and publications.

Dr Mikhael has published over 200 peer-reviewed articles in these fields and lectures internationally on a regular basis. Dr. Mikhael is deeply committed to health disparities in myeloma and is the chair of the Diversity, Equity and Inclusion Council at TGen. Dr. Mikhael is heavily involved in training future researchers and mentors junior faculty worldwide. Dr. Mikhael is an active member of the International Myeloma Working Group (IMWG) and recently led the ASCO guidelines in myeloma. Dr. Mikhael also serves as the Treasurer on the executive of the American Society of Hematology.

Dr. Mikhael did his medical training in Canada, including a fellowship in Multiple Myeloma at the Princess Margaret Hospital in Toronto. He also obtained his master’s degree in education from the University of Toronto. He then worked at the Mayo Clinic Arizona as a Hematologist from 2008-2018.
 

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