10 Multiple Myeloma Questions and Answers: Treatments and Side Effects

With new treatments on the horizon for patients with multiple myeloma, it’s important to understand what the standard treatments are, the role of CAR-T cell therapy and how to manage side effects.

Following the CURE® Educated Patient® Multiple Myeloma Summit, Dr. Brandon Blue spoke with us to answer some frequently asked questions.

Blue is an assistant member of malignant hematology at Moffitt Cancer Center in Tampa, Florida and chair of the multiple myeloma summit.

CURE®: How do you know if a stem cell transplant or CAR-T cell therapy is better?

Blue: They are basically two different options and are used for two specifically different reasons. Let me give you an example. The reason that patients typically go for a stem cell transplant is once their disease is under control. Typically, stem cell transplant lengthens the period of time that someone's disease is in what we call remission. The first step is to get the cancer from a very high level down very low.

Once it's low, you want it to stay that way, and so that's where stem cell transplant comes in to try to lengthen that period of time that the disease is under control before it comes back. Now that's quite different than CAR-T cell therapy. CAR-T is actually used when the disease has relapsed, meaning that we don't typically give CAR-T to people whose cancer is under control. We actually, unfortunately, give it as a treatment or a therapy when their cancer has relapsed to bring it under control. So they're used for two specifically different reasons.

Why do you need so many lines of treatment before you can be eligible for CAR-T cell therapy?

I'll use an analogy. Several years ago, our world was shaken by the COVID-19 pandemic. There were people from all over the country, and all over the world, who were affected by this. The good news is that we found a vaccine, and when the vaccines first came out, they weren't available for everyone right away.

Who did they go to? The people who needed them the most. Those were typically people with a low immune system and people who were elderly. We knew that those were the people who needed the most help. But over time, what happened? It became more and more and more available. The same thing is true for CAR-T cell therapy. This CAR-T is very new. So who did we offer it first to? The people who unfortunately ran out of lines of therapy who didn't have any other treatment options. As we know, the Food and Drug Administration (FDA) recently just approved it to be used in earlier lines of therapy. What will probably continue to happen is that they'll make it more and more and more available. But again, you must remember CAR-T compared to some of these other medicines, is still only in its infancy.

Being that drugs are so advanced these days, should the standard of care not be stem cell transplants?

That's actually one that's currently being researched. So typically, what happens is that U.S. experts all use our brains to try to figure out how we can make things better for patients. But just because we have an idea, we have to test that idea through research, and then after, we test that through research.

That's how we lead to changes within the current standard of care. There's been a lot of different things that people have thought of that could potentially beat transplant. And say, “Hey, we know that transplant is kind of a heavy ordeal. Maybe this will be better or that will be better.” But nothing so far has actually been proven to be better than transplant as of yet. There are a lot of things that people are thinking about and trying to be very creative with to try to prove that. So, there's a lot of research that's going out right now, but as of what's approved as of 2024. Unfortunately, there's nothing that has been able to beat it yet. So it's still considered what we call standard of care.

How are blood transplants done and how long is the recovery period?

What happens is that we, all in our bodies, make new blood the same way we make new hair and new fingernails — we also make new blood. And the place where we make new blood is in our bone marrow. Say, “Well, how do we do that?” We do that through these things called stem cells.

What we're able to do is give patients high doses of chemotherapy that can really kind of cleanse the bone marrow, because multiple myeloma is a bone marrow disorder. After we've cleaned the bone marrow, now the bone marrow is empty.

So you say, “Well, I can't live without a bone marrow. So what do we do?” We take those seeds or those stem cells, and we plant them in the ground, and now they grow, and they make new blood, just like seeds would get up and grow and make new flowers. Unfortunately, it doesn't happen overnight. So typically, we tell patients that they should expect somewhere about three to four weeks of recovery during that whole process.

Are CAR-T cells easier to extract than stem cells?

I wouldn't say easier or harder, because stem cells are a part of your body the same way T cells (white blood cells in the immune system) are. For example, T cells are the main soldiers that fight off infection. The only thing that we're doing is taking those T cells and saying, “Hey, you guys are great soldiers. Let's just change the target, and instead of fighting off infection or COVID-19 or some of those things, let's fight off cancer.”

We unfortunately have to teach the T cells how to do that. So that's why the process of CAR-T cell therapy isn't immediate. It takes about four to six weeks for us to remove those cells and now change those regular immune system T cells into what we call CAR-T cells which are now ready to fight off cancer.

How is it known which target to attack, such as CD-38 or BCMA?

The good news is that we have options for this disease, so there are a lot of different options. There are a lot of different nuances to why certain drugs are typically used in what order. So this is what we call a patient-specific answer.

One of the things that we're fortunate enough to have in multiple myeloma is actually personalized care, meaning that this is something that could be very specific for your specific type of cancer and it’s why we would say, “Hey, you know what? The next step for you might be A, but the next step for the very next person might be B,” so that's a very personalized answer. And I would say, talk to your provider, because again, the good news is we have options.

Does neuropathy get better after taking Velcade (bortezomib)?

So unfortunately, that's one of the best drugs. I'll say, fortunately, at least, that's one of the best drugs for multiple myeloma, but unfortunately, it has one of the stinkiest side effects.

I'll tell you that neuropathy can actually be a double-edged sword. Sometimes it can be this pain and tingling sensation, but at other times, it can also be numbness. And so with that, sometimes, once we either dose-reduce the Velcade (bortezomib), or even just stop it all altogether, there is a percentage of people who actually do improve.

Now the question will be, will you improve all the way so it goes all the way to zero? Possibly, but typically, there is a significant benefit once you either dose reduce or stop it, if you tell your provider early. So that's the key: once you first start feeling that neuropathy or something's not right, you want to make sure that you bring it to your provider's attention.

How can cytokine release syndrome side effects be treated?

One of the things that is a known side effect of CAR-T cell therapy is what they call cytokine release syndrome or CRS. And so, this is something that is a new treatment, because CAR-T is relatively new, but the good news is that we think that we've got it mastered. We have different ways to treat CRS. There is a medication called Actemra (tocilizumab) that works extremely well at decreasing CRS-related side effects, but also sometimes a simple Tylenol will work.

It depends on exactly what's happening at the time, but there are a lot of different options. But typically, if you're at a CAR-T center, they should be very well-versed at trying to make sure that those things work out well for you.

How important is taking vitamin D supplements for patients with myeloma?

Up to 80% of patients who have multiple myeloma actually have damage to their bones. What that means is you want to be on medications that can help strengthen the bones. We know that vitamin D and calcium are important. Calcium and vitamin D typically work together to help strengthen bones. So we always recommend that patients have some type of extra medicines that continue to make sure that their bones are as strong as possible during their lifetime.

How do you recommend getting second opinions? Would you necessarily need to go to a different practice/cancer center?

What I would say is that everyone who has multiple myeloma needs to typically see a multiple myeloma specialist. You say, “Why is that?” There are a lot of different reasons why someone may have cancer. Some people may have breast cancer, some people may have lung cancer, some people may have colon cancer and some people may have multiple myeloma.

But I'll tell you that multiple myeloma, when you compare it to the breast cancers, the lung cancers, the colon cancers of the world, is a much more rare diagnosis. And so, what that means is you want to make sure that the person who's treating you sees multiple myeloma frequently. If your doctor already does that and they say, “Hey, we see multiple myeloma every day,” then you could probably guess that you may be in good hands. However, if your doctor maybe sees multiple myeloma once a year, then we always recommend that you probably see a doctor who is considered a multiple myeloma expert and likely sees multiple myeloma a little bit more frequently.

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