Your Myeloma Questions Answered: PET Scans, Side Effects, and New Treatment Options

Dr. Joseph Mikhael:  

Hi everybody. Dr. Joseph Mikhael here, Chief Medical Officer of the International Myeloma Foundation. On a regular basis, I host a Q&A on Facebook through one of our Facebook Live events. At the time, I can never get through all of the questions, so I'm going to spend some time today going through many of the questions that have been submitted to us. Always encourage you to submit questions to the IMF, whether it's on Facebook or on X, or on Instagram, or any of our social media outlets. Just before I get into the questions, I want to invite you to our next Facebook Live because this is a special one. Every year in December, we have the annual meeting of the American Society of Hematology. This is where 30,000 people gather to talk about the latest and greatest in hematology and, of course, multiple myeloma. At that Facebook Live, I'm going to be joined by support group leaders who have been through the meeting and we're going to be talking about what the results of all this great research were and what it means for patients. You're not going to want to miss it.

All right, let's dive into our first question asks, "Can multiple myeloma trigger autoimmune disorders?" That's a really insightful question, Donna, because when we think of multiple myeloma, in some respect, it is an immune disorder or a cancer of a part of the immune system, and I have to say we don't fully understand all of the connections within the immune system and the association between different diseases. But I think in general, the way to answer this question would be that typically, myeloma itself will not trigger other autoimmune disorders, but of course there are some other immune-based diseases that can be affiliated with myeloma such as a neuropathy, when we have an interaction between myeloma and the nerves of the body, an association we never fully understand where patients can have some numbness and tingling typically in their nerves. And there are some other things like skin effects that are a little less common, but in general, we do not expect myeloma to trigger other autoimmune disorders. Of course, there are patients that can have both diseases separately.

Let's go to the next question that comes to us from Kim. I really like this question, Kim. "Should every myeloma patient get a PET scan at diagnosis?" The quick answer is we think so, yes. Why do I say that? Because we have emerging evidence all of the time that PET scans can help capture more of myeloma. Sometimes I say myeloma is like a crime scene, and what I mean by that is one piece of evidence doesn't tell the whole story. We need to check the M spike, the light chains, the blood counts, the chemistry in the body, x-rays, all of these things together make up the disease of multiple myeloma, and part of that is very careful imaging and we know that a PET scan can be very helpful to capture the disease. Also, it can be what we call prognostic or it can speak to how well someone's going to do if there is positive PET scan at the start of treatment and that disappears with treatment. So in general, we do encourage a PET scan or a similar kind of scan to be done at diagnosis.

Here's a great question from Tim who says, "If I relapse early, how permanent are belantamab or BLENREP side effects?" So great question here just as a quick review, belantamab or BLENREP is a new drug in multiple myeloma that was approved and then withdrawn from the market as being reevaluated by the FDA, and it works as an antibody drug conjugate, which just means that it's a drug that hooks onto myeloma and it carries with it a kind of backpack of a toxin that it drops in the cell to kill the cell. It's a very effective drug and we anticipate and hope will have it to be able to use again in the myeloma clinic. It does cause some unique side effects of which the one that is best known is a blurriness of the vision and dryness of the eyes.

And thankfully in direct answer to your question, we know that those side effects can happen, but when we hold back on giving the drug and we give it less frequently, those side effects will reverse in the vast majority of patients. So yes, there are side effects, but thankfully they can be reversed. Let's move to another question here on the subject of side effects as well. Where Beth asks, "What are the long-term side effects of TECVAYLI or teclistamab?" Teclistamab is a bispecific antibody. Remember, these are drugs that are called bispecifics, because they have two arms, one arm hooks onto the myeloma, the other arm hooks onto a local T cell or a soldier cell to help destroy that myeloma. We have a lot of experience now with teclistamab and drugs like it as to the side effects that they have. There are certain ones we look out for in the short term like the immune system reacting to it, something we call cytokine release syndrome, where we may also see some neurological changes over the first few weeks.

In the long term, what we specifically look for more than anything else is the risk of infection because although these drugs are very effective at taking down myeloma, there's a little bit of friendly fire there and some of the good immune producing plasma cells end up also being taken down, and so people have a lower level of their antibodies or their immunoglobulin putting them at risk of an infection. So those are the side effects that we watch for and it's so important to keep in touch with your treating team to report any evidence of a potential infection like a fever or a sore throat or a cough or a rash, those things we know that can herald an infection.

Let's move on to another great question here from Karen who asks, "Can DARZALEX or daratumumab alone be used for maintenance if I didn't have a transplant?" Well, Karen, it's a great question and also depends on what you were initially treated with. But typically when patients are not having an autologous stem cell transplant and they've been initially treated with DARZALEX or with another drug similar called SARCLISA or isatuximab, we usually partner it with lenalidomide as continuous therapy or maintenance therapy after their initial treatment. Now, some patients may not be able to have the lenalidomide or may have side effects from it or may be resistant to it, although in some circumstances we may use daratumumab alone. We typically don't use it alone for that continuous or maintenance therapy. Next question from Isabelle. "If I have MGUS and breast cancer, could hormonal or radiation therapy speed up my progression?" Well, I'm sorry to hear Isabelle, that you also have breast cancer, but as a quick reminder, MGUS or monoclonal gammopathy of undetermined significance is a pre-myeloma condition where a small fraction of patients, approximately 1% per year will go on to develop multiple myeloma.

We are not very familiar with what really leads to that progression from MGUS to multiple myeloma, and typically we do not see it with hormonal therapy or radiation therapy for breast cancer. But of course, it's impossible to know for sure what may cause that. I would typically note that if someone does require that therapy for a known cancer like breast cancer, that therapy should be given and we should simply continue to monitor the MGUS to ensure that it hasn't grown. Let's come to another question here from Alexis. This is very impressive. "After 10 lines of therapy and CAR T cell therapy, I'm in remission now." Which by the way is fantastic. Congratulations. "But do I still have options later?" Well, of course it's hard to comment without knowing all of the prior lines of therapy, but the quick answer is yes. We are constantly developing newer and more options for our patients with multiple myeloma.

Whether they be the standard of care treatments or clinical trials, we have many more options today in myeloma than we even had just a few months ago. In particular, I would note that when we started with CAR T cell therapy, we were very concerned that when patients would relapse after CAR T, we wouldn't have options because the disease would come back so aggressive. But we've actually come to learn that patients can very much be treated after CAR T cell therapy and do very well. So I hope you stay in remission for a long time, but when that time unfortunately comes when the disease wakes up, I suspect we'll have several options for you, Alexis. Next question comes from Debbie, "After eight years on Revlimid, lenalidomide, is my bone marrow damaged?" Well, that's a very insightful question. It's a balance when we use various therapies and treatments in myeloma that we want to hit the myeloma but not hit the rest of the good cells in the body.

And just about every treatment we use is focused primarily to hit the myeloma, but there is some effect on the surrounding tissue and in particular, the bone marrow. Thankfully, we have many of our patients on maintenance Revlimid like yourself who have been on it for many, many years and actually have minimal negative effect to their bone marrow. Others may have some effect. So I would have to discuss this with you one-on-one around the balance between remaining on the drug to keep the disease away and the potential effect that it has on the marrow. But in general, we do see only a very small fraction of patients in whom the marrow is going to be affected so much that it'll influence their subsequent therapies. Unfortunately, that's all I can get to now, but if you have more questions for me, tuck them into the comment section below or use any of our social media channels and use the hashtag, AsktheIMF and we'll do our very best to answer your question.

But remember, there are other ways to ask questions as well. You can ask Myelo, our AI chatbot, 24/7, questions. You can reach out to our info line and speak to an individual about your questions. You can attend a virtual webinar or attend an in-person seminar where you can ask us directly. Make sure you go to myeloma.org to learn about all these resources and more so that we can help you through your journey with multiple myeloma. 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.