Multiple Myeloma Questions Answered: Life With Myeloma, Infections & CAR T 

Dr. Joseph Mikhael:

Why do some myeloma patients live 15 or 20 years, but others with the same treatment live less than three? If myeloma can be detected with a blood test, why aren't we screening? If bispecific antibodies are used earlier, will it compromise the use of CAR T-cell therapy later?

Hi everybody. Dr. Joe here from the International Myeloma Foundation, and we love answering questions. Today I'm going to dive into several questions with you that have been brought to us by patients, care partners, long-term survivors, newly-diagnosed patients, relapsed patients, through all of our social media channels at the IMF, which includes Facebook, Instagram, X, and YouTube. Answering questions empowers patients and their care partners as they have conversations with their healthcare providers to decide what's best for their multiple myeloma. Some of these questions are deeply personal. Some of these questions are practical. Some are about science. Some are about newest treatments. Some are the kinds of questions that I get every single day.

Just before I dive into the questions, let me ask you to subscribe to our YouTube channel. Almost 70% are not yet subscribed, and you can do that right now. By subscribing, you provide us a greater opportunity to share this information in a wider network. We know that patients want answers to their questions, and we want to help in every way that we can. All right, let's dive in.

This first question comes to us from Leslie, who says, "Why do some myeloma patients live 15 or 20 years while others with the same treatments live less than three?" Well, thank you for asking this question, Leslie, and it reminds us that we call it multiple myeloma for a reason, meaning there is a huge spectrum of this disease. Sadly, there are still patients that have a very aggressive form of multiple myeloma that may unfortunately mean that their survival is only two, three, or four years. Whereas we have other patients who have a much more controllable version of multiple myeloma, where now we're seeing a larger and a larger fraction of patients live 10, 15, 20, and even more than 25 years with multiple myeloma.

There is no doubt that the average survival of myeloma continues to improve with all of these major advances, but it is humbling to us as a myeloma community to know that there are still very high-risk forms of multiple myeloma, and we're working very hard to understand them better and to find tailored therapies for that group of patients so that their outcomes can improve.
All right, let's come to another question here from Mac, who says, "Why do some people say myeloma is treatable when patients are still dying from it?" Well, thanks, Mac. I love to be optimistic about multiple myeloma because people are living longer and living better with the disease, but I'm also realistic about myeloma, that this disease still takes the lives of over 12,000 patients in the U.S. Alone every year.

So when we talk about treatable or manageable, we're talking about being able to control the symptoms and the signs that come with multiple myeloma so people can live not only longer, but can live better with multiple myeloma, and thankfully, that is happening. There is no doubt that every year we see a smaller fraction of patients dying from multiple myeloma, although of course, tragically, it still occurs.
What really matters in this process, of course, is that we not just look at numbers of how long people live, but we think about their quality of life, how well that they live. And what excites me about so many of our new therapies is that we are able to control the disease better, but also allow patients to remain in the kind of lifestyle that they want, to continue doing the things that they love to do, working, traveling, doing their hobbies, visiting their families. And that's the focus of our work as we seek to improve the lives of patients with multiple myeloma and accelerate the cure for this disease.

Let's come to another question here, from Sharon. Sharon, I have to tell you, I'm really touched by this question. You ask, "My grown children are my care partners and the guilt can feel overwhelming. How do patients cope with feeling like a burden?" Sharon, for you to share that with us touches my heart, and I'm sure it touches many listening to this right now. It is very hard to feel like you are a burden to others. I'm thankful that you have care partners in the form of your children who are taking care of you. And coping is difficult, both as the care partner and of course as the patient, which is one of the reasons why we want to provide resources to both groups, because people will cope differently. People will approach this differently. The resilience that develops when you have myeloma or when you're caring for someone with myeloma evolves differently based on the way people approach life.

I would encourage you to seek out some of those resources, whether it's through your doctor in the clinic, calling us at the IMF, because we can look at ways to help you deal with the guilt that you're feeling and also to help those care partners taking care of you so that they can get rest as well, so that you may not feel that they are as much of a burden as you may feel that they are right now.

This is a very intimate disease. I always say I don't treat myeloma, I treat people. And when myeloma affects an individual, it affects their whole environment, and it's so important that we attend to the whole of that environment. Thanks again, Sharon, for asking that really important question.

Let's come to a question here that Betty asks. "I was diagnosed at 83 after multiple fractures, and I'm exhausted. How do older myeloma patients decide what treatment is still worth pursuing?" Wow, thanks for asking that question, Betty, and for being so open with us in sharing the struggle that you're having in deciding on treatment.

I would start by saying first of all that the treatments we're using in multiple myeloma, in younger and older patients for that matter, is considerably different than the treatments we just used a few years ago. Often when people hear treatment for cancer, they immediately think of high-dose chemotherapy and losing their hair and getting very sick. A lot of our targeted tailored therapies that we have now in myeloma can actually be very tolerable to patients and very often will improve the symptoms that they're having, like likely the pain that you're experiencing from those fractures.

That being said, we don't tell our patients, "You'll take it and you'll like it." I never like that expression, because we want to have a shared decision-making process where we sit with our patients and share what are the options, and sometimes the focus is less on reducing the myeloma and more on the comfort of the patient. And so that discussion can be had with your healthcare team because now more than ever do we have more options for patients with multiple myeloma at all stages of life.

We've had some great questions so far, but I just want to pause for a moment and emphasize the importance of asking these questions. You may have a question that is actually really going to help others. So if you have a question literally about anything in multiple myeloma, the diagnosis, treatment options, MRD negativity, clinical trials, side effects, please include them right here in this video down in the comment section. Just use the #asktheimf hashtag and we'll work hard to answer your question. Also, if you want to ask a question in person, make sure you learn about our in-person seminars that are coming to a city near you, and you can learn about those at events.myeloma.org. All right, let's get back to these great questions.

"If bispecific antibodies are used earlier, could they make CAR T-cell therapy less effective later?" Someone has definitely been listening to our educational seminars, because this is a very informed question. Very quickly to remember, bispecific antibodies are these drugs that have two arms. That's why they're called bispecific. One arm grabs onto the myeloma. Another arm grabs onto a local T-cell and connects that T-cell to the myeloma, kind of like a soldier cell, to activate it and destroy the myeloma. CAR T-cell therapy is where we take T-cells out of a patient and train them, as it were, to fight myeloma, and give them back to patients.

We have learned that a lot of patients can have both treatments at different times for different relapses, and we call this sequencing. Typically, we prefer to do the CAR T-cell therapy first because we're using someone's T-cells. They take down their myeloma, but then the T-cells get a rest before we would then engage them with a bispecific antibody. The reverse is what Anita is asking about. What if I give a bispecific antibody, which we typically give over a longer period of time, where we're constantly using someone's T-cells, using someone's T-cells, using someone's T-cells, and then if we want to immediately go to CAR T-cell therapy, those T-cells might be tired or what we call T-cell exhaustion?

So it may indeed compromise the use of CAR T-cell therapy immediately, but there are patients in whom we've waited, maybe given a different treatment to let their T-cells rest, and used CAR T-cell therapy later. So really we've developed tactics and ways of using both therapies in either combination, but in general, we've historically favored doing CAR T before bispecifics. The last comment here is we really want to think about what is the best therapy for that patient at that time. And sometimes that is a bispecific antibody before a CAR T-cell therapy, so we don't want to make it too simple that one has to precede the other. Fantastic question.

Let's take another question here, from Kenneth. "Can bispecific antibodies weaken the immune system, and what can patients do to protect themselves from serious infections?" I'm really glad you've asked this question, Kenneth, because yes, we know that although bispecific antibodies are very effective at taking down myeloma, there is some friendly fire. Those bispecific antibodies are meant to grab onto a myeloma cell and a T cell and activate that T cell to destroy the myeloma, but sometimes it destroys some of the good plasma cells around the myeloma cells. Those are the ones that make our antibodies that help us fight off infections, and so it does weaken the immune system. People are at risk of infections. We know that patients on bispecific antibodies are actually at very high risk of getting infections for many reasons.

So first of all, talk to your doctor about what can be done to prevent infections, because almost every patient on a bispecific antibody is given extra immunoglobulin or antibodies, what we call IVIG, to reduce the risk of infection. We also give some preventative antiviral and antibacterial drugs at times to reduce that risk of infection, and sometimes, based on a patient's experience, we may add other drugs to it. Lastly and perhaps most importantly, you need an open dialogue with your healthcare team, so that if you have any symptom like fever or cough or something that might indicate an infection, that it get looked at very quickly because infections can grow more quickly in a patient on bispecific antibodies. Thank you for asking that question.

Here's another great question, from Daryl. "After starting a bispecific antibody, I developed pneumonia and later bronchiectasis." That's a condition in the lungs when someone has had repeated infections there. "Can bispecific therapies increase the risk of serious lung infections?" Well, the quick answer is, unfortunately, yes. We know that infections are very common with bispecific antibodies, and we know in general in myeloma, the most common infections that we see are in the upper respiratory tract and the lungs. That's partly because the way myeloma affects our immune system, it weakens the part of the immune system that can fight off the typical bugs that like to invade our lungs and our upper respiratory tract.

I'm very sorry to hear that it's reached a point where you've had lung infections and now bronchiectasis, but we want to try and prevent that as much as possible in patients by giving them immunoglobulin in the form of what we call IVIG or intravenous immunoglobulin, giving them protective and prophylactic antibiotics and then intervening very quickly when someone has an infection. It may also mean that we may have to delay or even discontinue the bispecific antibody.

Well, thank you, everyone, for asking these questions. These are truly remarkable questions. They're personal. They're really what patients and care partners are experiencing every day. If you have more questions, please send them to us. Use the hashtag #asktheimf. We structure so much of our education around the very questions that you send in and we know how important they are to you, and we want you to know that they're important to us.

Of course, the IMF is here for you in multiple ways. You can reach us at the website at myeloma.org. You can hear about the upcoming events at events.myeloma.org. You can call the info line, or you can learn about our support groups at support.myeloma.org. If this video was helpful to you, please subscribe to our YouTube channel of the International Myeloma Foundation, where you'll find a whole host of resources available to you. Thanks so much for joining us today, and we'll see you on the next video.

If you're a newly diagnosed patient with multiple myeloma or just want to learn the basics of multiple myeloma, I would recommend our video, What Is Multiple Myeloma: A Simple Guide for Newly Diagnosed Patients. But if you have relapsed disease and you want to learn more complex things about myeloma, you may want to watch one of our seminars that have been recorded where we learn about new options for therapy, the latest in science, and how we make decisions about the choices that we have for relapsed multiple myeloma. And if you want to go deeper and learn more about relapse myeloma and the complexities of the science of myeloma, we have recorded many of our seminars and webinars that can be available to you to help you better understand this disease and the treatment choices that come with it. You can find those videos linked here.