Can Multiple Myeloma Be Cured? Dr. Joe Answers Your Biggest Myeloma Questions

Dr. Joe Mikhael:

Is there any more updates about MRD testing in the blood and can MGUS patients get sick? Hi everybody. Dr. Joe here from the International Myeloma Foundation, and I'm here to help answer the questions that stream into the IMF through all of our social media channels and even at our live and virtual events. Before I dive into the questions, however, I've got a favor to ask. Amazingly, about 70% of people watching these videos haven't yet subscribed to our YouTube channel. We made it easy for you. Right underneath my face is that bar right there. Clicking that subscribe button is going to connect people like yourself who want to learn more about myeloma to the information that they're searching for. Let's dive into these questions. The first one comes to us from Laura. Why isn't MGUS treated before it becomes active myeloma? Why are patients told to wait until it turns into cancer?

Great question, Laura. And the short answer is we know many patients with MGUS will actually never develop multiple myeloma. So what becomes important is us to predict and to follow patients along to see whose disease is going to grow and whose disease will not grow. We don't want to over-treat patients by giving them treatment that they may not require, but we also don't want to wait too long before the disease grows and patients get treated too late. So that's why it's so important when someone has MGUS or monoclonal gamopathy of undetermined significance that they be followed by a physician and a healthcare team on a regular basis to see if their disease changes or if it just becomes stable. Let's come to another question here from Justin. I'm 56 years old. Is multiple myeloma ever curable or is remission the best goal? Wow, this is really a fantastic question and I'm really glad you've asked it, Justin, because it has really only been in the last few months that the myeloma community has come together to say we need to talk more about true cure of myeloma.

Not that we've necessarily cured myeloma, but that we're seeing a larger and larger fraction of patients get treated for a period of time, go off treatment, and stay in remission for a very long time, which is really a form of cure. So I would be very optimistic about the future of multiple myeloma. We have better treatments that are giving patients deeper remissions that are lasting longer. And even more importantly, we're providing treatments that allow people to continue to enjoy their quality of life, not just their quantity of life. So I know that I can't say we've cured myeloma yet, but we're getting closer and closer every step of the way. Stay tuned with us as we explain to you more and more about these new treatments so that we can understand how we will arrive one day at a cure for multiple myeloma. All right, let's come to our next question.

Why are myeloma medicines so expensive? And are there effective oral treatment options? Well, that's a really complicated but important question that myeloma treatments typically have been under development for many, many years, and there are all sorts of complex processes that determine what the actual price is of a drug when it is introduced into the market. At the IMF, we've been working very hard in advocating for ways that patients can have their drugs more fully covered, whether they're oral therapies or intravenous therapies or subcutaneous therapies in the skin that we often give now for multiple myeloma. Thankfully, many of our treatments are indeed oral agents where patients can take pills at home and don't have to come into the clinic as regularly as they used to. As we move forward and more drugs are developed, we will continue to advocate to ensure that these great drugs can be accessible to all independent of financial background.

I'm asked here, if someone is already in remission, why would they ever need CAR T-cell therapy? This is quite a brilliant question because it sounds odd that you would treat someone who's already in remission, but we know that remission means that the disease is down. If you will, it's asleep, but it's not entirely gone. We've come to appreciate that if we can get the disease down to that very, very low level, that may be the very best time to do a CAR T-cell therapy. Those CAR T-cells will go after that little bit of disease that we may not even be able to measure. That often has resulted in people staying in remission for a much longer period of time. In fact, we've also learned that if we can get the disease down to a low level before we give CAR T-cell therapy, it also reduces some of the side effects that patients can experience during CAR T.

Let's come to another question where someone asks Revlimid side effects became unbearable, so I stop taking it for now. How risky is it to pause treatment when you're almost in remission? Well, I'm sorry to hear that you're experiencing side effects with Revlimid, but we know that unfortunately about a third of patients who are on Revlimid typically in what we call maintenance treatment or ongoing treatment after an autologous stem cell transplant have to come off the drug because of side effects. In fact, we're also learning that perhaps we don't have to keep people as long on Revlimid as we used to think we do. So I think it is very important that if the side effects were unbearable, that you come off the therapy and have a conversation with your healthcare team. Is the disease down low enough that we could just pause treatment and continue to wait and watch or is there need to introduce something else?
Very often we can just wait and watch and the disease will stay asleep for an even longer period of time.

Here's a great question. Stem cell transplant was incredibly hard. Why do patients still go through transplant when newer treatments exist? Wow, what a fantastic question. And this is actually a question that we love to debate as myeloma doctors. Stem cell transplant, when a patient receives a high dose of chemotherapy, has for many years been one of the reasons why patients are living longer with multiple myeloma. We also know that as this question noted, it's tough to go through. And so we're now doing clinical trials to test the difference between using a transplant and not using a transplant or using a transplant and using some of our newer treatments like CAR T-cell therapy or bispecific antibodies or antibody drug conjugates. One way I like to think about it is you're the champ until someone knocks you out.

And right now, transplant in those patients who are eligible, if you will, is still the champ. It has still allowed patients to live longer and better with multiple myeloma, and that's why we continue to use it. Will we always use it in the future? A time will only tell as these new treatments come forward, and we should have the answer to that over the next couple of years. Great question. Here's another question that says, "I was told I had two years to live 13 years ago, and I'm still here. What has changed in myeloma survival?" Well, first of all, let me say I am thrilled to hear that you have had myeloma for 13 years and continue to thrive in just asking this question. And although that's marvelous and wonderful, it's also happening more than ever before. We used to say when I started in myeloma over 25 years ago, that most patients would maybe live one or two years with the disease.

Now I can tell most of my patients I expect them to live more than a decade, if not even matching their life expectancy. And all of this is because of so many of the new therapies that we have and the clinical trials that have brought us to a place where we can introduce these drugs into the market and have our patients on them and not only live longer with myeloma, but live better with myeloma. There has been a much greater emphasis on quality of life in these clinical trials and in these agents that we're using. And it's really marvelous to be a part of this myeloma community where we can see our patients living better and living longer with multiple myeloma. Here's to another 13 years with multiple myeloma. Here's another great question. I'm 75 and newly diagnosed, and my doctor recommends an autologous stem cell transplant.

What happens if I don't want to do it? Well, I'm sorry to hear about your diagnosis, but I'm glad you're being seen by a specialist and having the conversation about autologous stem cell transplant. We know that transplants can help many patients, but is absolutely not necessary in all patients. We don't determine eligibility by age alone, although age may influence us a little bit. If someone is over the age of 75, we tend to be more cautious about offering transplant. So this should involve a very careful discussion with your team. But let me reassure you, the treatments we have now without a stem cell transplant are extremely effective. And very often we don't have to pursue transplant when patients are in their 70s because we know that unfortunately transplant does come with certain side effects. And now with these newer treatments, we know that patients can live long and well with their disease.

Here's another question. I have MGUS and I'm tired of people assuming I'm fine. Can MGUS make some people feel sick? Well, I'm sorry that people just assume that you're feeling fine with MGUS. MGUS or monoclonal gamopathy of undetermined significance. We often describe as a pre-myeloma condition, meaning someone has some of that abnormal protein in their blood, but it's not grown to a level that it is true myeloma and is going to damage the body. Typically, we think of MGUS as being asymptomatic or not causing symptoms, and that's probably why people assume that you're fine. That being said, there are a small fraction of patients who do experience certain side effects even from that small amount of a monoclonal protein. Sometimes it can be a neuropathy, sometimes it can be a skin condition and other things. This is really important to discuss with your team. It might not mean that the MGUS has developed into myeloma, but it can be a condition, if you will, associated with mGUS that may or may not require treatment.

So I would follow up with your healthcare team to discuss that specific point. But in general, we think of MGUS as being a disease that we just monitor and watch and wait because only a small fraction of those patients will go on to develop active multiple myeloma. Here's another great question. What treatments can stop smoldering myeloma from progressing? And why are so many patients still told to wait and watch? This is one of the most challenging areas of myeloma research right now. We talk about smoldering myeloma. It's a condition where people have more than mGUS, that true pre-myeloma condition, but they haven't quite developed active myeloma yet. That in between space is called smoldering myeloma. We know that there are certain forms of smoldering myeloma that are very close to myeloma that can and should be treated, and we even have approved therapies for them.

But a lot of people with smoldering myeloma, even though they have more than mGUS, they may never develop active multiple myeloma. And so our default is to monitor them, to watch them very closely. We're researching very carefully now. Are there certain features that can help us predict if someone is going to become active myeloma? Because we don't want to wait too long. Sadly, many myeloma patients are diagnosed late in their disease course, and we want to be able to catch it early. So that's why some patients with smoldering myeloma may be treated, and some patients may just be monitored. It really depends on the details of their smoldering myeloma. And I would, of course, discuss this with your healthcare team to figure out what is the best strategy of monitoring or maybe even intervening so that the disease does not become active multiple myeloma. Well, that's all the time I have for today, but thank you so much for asking questions.

Remember, you can always reach out to us at the IMF. You can reach out through our social media channels and use the hashtag asktheimf, and we'll get to your question. Maybe you want to ask it in person at a live meeting or a virtual meeting, or maybe you want to speak to someone on the phone. Reach out to our info line and we'd be happy to communicate with you and to talk you through this journey with multiple myeloma. And if you've been enjoying these videos, please subscribe on the button below. When you subscribe, information reaches more people and you're kept in the loop every step of the way so that you know what's happening in multiple myeloma.