Answering Your Top Myeloma Questions: Maintenance Therapy, Imaging, Neuropathy, and More 

Dr. Joseph Mikhael:

What is functional cure for smoldering myeloma? What is the best imaging modality for multiple myeloma? And what is the best ideal maintenance therapy after transplant for myeloma? 

Hi, everyone. This is Dr. Joe here, chief medical officer of the International Myeloma Foundation. We host Facebook lives and provide the opportunity for people to ask questions, and sometimes we have so many questions we haven't the opportunity to answer them all. So today I'm going to take time to answer some of those questions. 

Whenever you want to ask a question through any of our channels, please use the hashtag #AsktheIMF, whether it's Facebook or X or Instagram, and we want to help answer your questions. Of course if your question is more personal, feel free to direct it to us through the info line that you can reach by phone and by email, and always find us at myeloma.org. 

All right, let's get to these questions, because there are a lot of them. Here's a great question from Jason, "Are artificial sweeteners like stevia okay to replace sugar?" That's a great question, and there's always going to be great questions when it comes to diets, and people are going to have different opinions. 

I think the simplest way to answer this is to say that generally speaking, these additional supplements of different types are not by themselves particularly damaging to us, especially in moderate amounts. That's maybe the most important thing I would like to say. It's when people use them extensively, repeatedly, multiple times during the day that there can be some consequences and it affects actually our behavior and the way we process foods and the way we think about sweet and sugary foods by using too much sweetener. 

Here's a second question from Jade, "Can you comment on the MRD blood tests instead of bone marrow biopsies?" This is really important and a wonderful question. 

So MRD, remember, stands for minimal residual disease. We want to try and see if we can detect even tiny amounts of myeloma, and we typically do this by doing it through a bone marrow test, which is really the headquarters of multiple myeloma. But we have been doing a lot of research and work, and this is a big part of the IMF's research and work, is trying to see can we replace doing the bone marrow by actually measuring it in the blood? 

And I can't say we're there just yet, but every few months we get closer as we develop more sophisticated tools to measure myeloma in the blood. So coming to a theater near you, hopefully coming soon, we will be able to replace some of our bone marrow testing with just blood testing. 

Here's a question from Terry, "Can you comment on masking? Many patients I speak to are getting frequent infections and telling me they're not masking. Do you encourage masking to decrease infections?" Well, we have to remember of course that all myeloma patients are at risk of infections. It's part of myeloma. Remember, myeloma is a cancer of the immune system and that part of the immune system that often protects us from infections. So we want to take multiple steps to reduce that risk, and one of those steps can be using masks, and we learnt of course a lot about this during the pandemic. 

So I'm not going to say that I insist that all patients are always wearing masks. Of course not. But in particular higher-risk situations or at times when in communication with your healthcare team, you know your immune system is a little bit weaker during active chemotherapy, after a stem cell transplant, or periods of time where your immune levels may be low, this could be part of that. 

The balance, of course, is that we want to make sure that people are enjoying their lives as well, and we want to ensure that they're not feeling too restricted to always have to adhere to something like wearing a mask. 

Donnamarie asks, "How do I know if I have neuropathy versus tingling and numbness in my toes and my feet?" So neuropathy is a condition we can see in multiple myeloma sometimes from the disease itself, but often from the treatments that we give. In particular, certain drugs we know are associated with neuropathy, in particular thalidomide and bortezomib or Velcade. 

And the way to really know the difference is obviously to speak to your healthcare team about it, but the neuropathy we typically see from these drugs and from myeloma typically happens in both either hands or feet in a similar kind of way. Wouldn't just be in one hand or in one foot, it's either both feet or both hands. 

It typically starts at the tips of our fingers or the tips of our toes and slowly ascends up through the sole of the feet or through the palm of the hand up towards the wrist. And that of course requires a conversation with the primary care or with the treating physician to discuss further what can be done for it. 

Janine asks a great question, "My latest treatment is KRd," or KYPROLIS, Revlimid, dexamethasone. "If I relapse, will Darzalex be added to my treatment plan?" Well, of course it's hard to be very specific with you, Janine, to give specific guidance on your care, but you're raising an important point, which is when someone is being treated with a certain drug or combination of drugs, if the disease grows while on those drugs, we will typically change the treatment plan. 

We won't just add another drug to it, like in this case, Darzalex or daratumumab, we will likely change the whole regimen and give someone, let's say, Darzalex with a different agent like pomalidomide or selinexor that is different than the treatment that someone is on. 

Here's a great question from Jean, "What if you have myeloma and already have an autoimmune disease?" Even though myeloma is relatively rare, we sometimes do see it in conjunction with other diseases, and sometimes patients can have other conditions, sometimes other cancers, or an autoimmune disease. 

This requires a careful communication between the team that's taking care of the autoimmune disease and the multiple myeloma. Interestingly, sometimes the same treatment may help both, but we want to have that open and clear communication. 

Generally speaking, the treatment for the myeloma would be the same whether someone has an autoimmune disease or not, but we want to know that to make sure that we're looking for markers of both diseases while someone is being treated. 

Here's a great question from Ann, "What is the status of smoldering multiple myeloma? Are you still calling it a diagnosis?" And that's a very insightful question, Ann, because the spectrum of myeloma is broad. On one end, we have what we call MGUS, or monoclonal gammopathy of undetermined significance. I know it's a mouthful. But it just means that someone has a very small amount of that abnormal myeloma protein. 

And the other end of the spectrum, someone has active multiple myeloma, and in between we have this thing called smoldering myeloma, and we, frankly, keep changing the definition. I think that's what you're asking about, Ann, is what is the status with it now? 

Well, there are different ways of approaching it and we still have to study it, but it still is a diagnosis. It is a place that typically we're not treating patients, but we're watching them closely to see if they move towards active myeloma to require treatment. 

Lots of great clinical trials are ongoing to help us answer the question, "Should we be treating smoldering myeloma to catch the disease early?" And more of that to come in my research updates in the future. 

Here's another great question from Sharon, "If you don't get into remission from stem cell transplant, but have low-level disease, M-spike of 0.4, is maintenance acceptable or should more aggressive treatments be tried?" Great question, Sharon. And it speaks to our desire typically of getting patients into a very deep response with their initial therapy and transplant and sometimes a little bit of treatment after transplant. We often call that consolidation. 

So for one individual case like this, it's hard to be specific, because sometimes .4 may actually be a really big drop from where it was or some patients with so-called low-risk myeloma may not need to get all the way down. So this does require a conversation with the healthcare team, but I really like this question because it reminds us of the importance of getting the disease down. The depth of response will often reflect the duration of that response. So it is important to get that deep response early on so that it can be durable over time. 

Here's a great question from Anita, "Is Revlimid enough for double-hit high-risk multiple myeloma?" And I think she's asking about it in the maintenance setting. 

So maintenance is what we give right after a transplant to maintain the remission. That's why we use the word maintenance. And typically we use Revlimid alone for most patients, but we do have a lot of evidence that points to the fact that if patients have high-risk myeloma or multiple what we call cytogenetic abnormalities, where we know the myeloma cells are more aggressive, we're typically using more than just Revlimid. 

Sometimes a proteasome inhibitor like a Velcade or KYPROLIS might be added to it, or sometimes daratumumab or Darzalex may be added. So again, an important conversation with the healthcare provider, but typically when we know someone has high-risk myeloma, we're giving them dual maintenance therapy instead of just Revlimid alone. 

Here's a great question from Peggy, "Would Raynaud's be considered peripheral neuropathy from Revlimid or myeloma?" It's a good question because the answer isn't always clear. We do see some patients that have this thing called Raynaud's phenomenon, which we can describe as we know in patients, fingers can change a bit of color and they can have a sense of coldness within them. 

Sometimes this can exist entirely before someone has myeloma just as a completely separate phenomenon. We sometimes do see it affiliated a little bit with myeloma, partly because we know myeloma is a disease of the immune system. And sometimes it can be drug-associated, not typically with Revlimid, although it has been reported. 

So again, this is something to discuss with the healthcare team, because typically the treatment for it is the same whether or not we know it's from the myeloma or by itself. But if we do think it's drug-related, we may have to change the drug. 

Here's a question from Elaine, "How do you know your myeloma has progressed from MGUS, or are there any symptoms to watch?" This is a really important concept and idea, because when we think of that spectrum of myeloma, from MGUS to smoldering myeloma to active myeloma, we're typically following patients with blood work to see if it's changed. Because by definition, MGUS shouldn't really have symptoms in and of itself, but when someone has active myeloma, they do. And even smoldering myeloma, which we even sometimes call asymptomatic myeloma, should also not have symptoms. 

But the symptoms that we do see that people have when they have active myeloma can be many different things. The three most common ones are that someone gets very fatigued, sort of out of keeping with usual fatigue. Someone has pain, a particular pain within the bones. And three, if the blood test was done, people can have anemia or a low hemoglobin level, which also of course contributes to fatigue. 

So those are the kinds of things that we watch for. But I would say the most important way I can answer this question is to remind people that it's following those blood tests that become so important, because we want to catch this disease before the symptoms begin. 

Well, the questions keep pouring in, and I'm happy to see that, because we want to answer your questions for you. As I noted earlier, please don't hesitate to reach out to us, whether it's through Facebook, through Instagram, through X, directly through our InfoLine or at myeloma.org. Use the hashtag #AsktheIMF, and we're more than happy to try and answer your questions. We trust this has been helpful to you in your journey with multiple myeloma.