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Published on July 22, 2021
What Is Peripheral Neuropathy?
In this segment, host and patient advocate James Omel, MD, talks with Muhamed Baljevic, MD, FACP, Medical Hematologist Oncologist at Nebraska Medicine, and Sarah Holstein MD, PhD, Medical Hematologist Oncologist at Nebraska Medicine, about peripheral neuropathy — a common side effect of multiple myeloma. Keep watching to learn more.
Support for this series has been provided by Karyopharm Therapeutics. Patient Power maintains complete editorial control and is solely responsible for program content.
Transcript | Peripheral Neuropathy in Multiple Myeloma
Dr. Omel: Good evening, Nebraska. Welcome to Dinner with the Docs for myeloma patients and their families. My name is Jim Omel, and I'll be hosting tonight's program. My personal history includes multiple myeloma since 1997, which makes me a 24-year survivor. I'm joined tonight by two myeloma experts, Dr. Muhamed Baljevic and Dr. Sarah Holstein. Dr. Baljevic, could you please introduce yourself?
Dr. Baljevic: Good evening, everybody. It's my pleasure to be here. Dr. Omel, as well, thank you very much. I'm a myeloma specialist at University of Nebraska Medical Center. My patient and research interest is in multiple myeloma. I treat myeloma at all stages of disease. I also transplant multiple myeloma and I'm involved in CAR T-cell studies at university. It's really a pleasure to be here and be part of this program, which I know is always very, very well-attended and of great interest and help to patients across many regions in U.S.
Dr. Omel: Very good. And, Dr. Holstein, could you please introduce yourself for us?
Dr. Holstein: Hello. Sarah Holstein here. I'm also at the University of Nebraska Medical Center as a myeloma specialist. Previously, I served as a myeloma specialist at the University of Iowa and also Roswell Park Comprehensive Cancer Center. I likewise do research in myeloma, but I also have a laboratory research interest, where we're trying to develop new drugs, hopefully that will someday be used to treat myeloma patients.
Dr. Omel: And the question is please discuss the implications of neuropathy in myeloma. Neuropathy is certainly one of the potential side effects that I've heard about through the years. So, can you please discuss that for us? Neuropathy.
What Is Peripheral Neuropathy, and How Common Is This Side Effect?
Dr. Holstein: So when we talk about neuropathy, it's kind of a general term that can really encompass a number of symptoms, but in general, when I'm trying to screen and ask somebody whether they have any symptoms that might be consistent with neuropathy, the things I'm asking about include whether or not they are experiencing any numbness or tingling or burning sensation, typically starting in their hands or feet. But sometimes it's also just a feeling that their sensation in the hands or feet isn't what it should be. Sometimes I get the description of it feels like you're walking on pebbles all the time. So that's not necessarily numbness or burning, but it's just an altered sensation. But you can also have neuropathy that affects other nerves in the body that can impact, for example, your blood pressure control and et cetera.
With respect to neuropathy and myeloma, there's a lot of interest in determining whether the abnormal protein coming from plasma cell disorders can actually be causing the neuropathy. But certainly, we as healthcare practitioners, do cause neuropathy to develop in our patients with myeloma because of some of the drugs that we use, including most commonly, a drug called bortezomib or Velcade, which we use quite a bit these days in the upfront management of patients with myeloma. What we hope to achieve certainly is treatment that does not impact or does not cause neuropathy, or cause very minimal neuropathy, and what we really hope to do is not to cause any permanent neuropathy that patients will then have to live with.
Dr. Omel: So you have to be careful what drugs you use, perhaps how long patients use certain types of drugs to avoid neuropathy. I've heard that prevention is actually more effective than trying to cure it once it's happened.
Dr. Holstein: That's absolutely correct. We don't have great drugs, unfortunately, that can effectively treat the symptoms once they develop. We do have some drugs that can improve the symptoms. Sometimes it's just tincture of time, especially after transplant. Sometimes patients will tell me that the neuropathy has worsened, but then as we get months out from the transplant, it will get better and better over time.
The tricky thing though, is that you can have somebody who's been on Velcade for two weeks and suddenly develop symptoms, versus somebody who's been on Velcade for a year and doesn't have any symptoms with respect to neuropathy. So, unfortunately, we don't have a good screening test to help us figure out when that neuropathy symptom is first going to start and who's going to have the most severe form of it.
Dr. Omel: I would like to show a video from a patient who's in my support group. She's actually my co-leader. And I think it's an important question that sooner or later, every myeloma patient and their family has to think about.
Is Multiple Myeloma Hereditary?
Arlene Preisendorf: Hi, I'm Arlene Preisendorf and I'm from Grand Island, Nebraska. My question is about the hereditary nature of myeloma. As a mother and a myeloma patient, do I have to worry about passing this disease onto my children? Also, how much is known on whether myeloma can be inherited?
Dr. Omel: I've been asked that many times in my support group and I have my own answer, but I'd certainly love to hear what you two have to say.
Dr. Baljevic: This is a really good question and actually comes up fairly often among patients as well as family members as well, even more often really, because everybody is really self-conscious about the risk of cancer in the family once somebody in family has a cancer.
Multiple myeloma, at this point in time, does not have any particular isolated gene that is sufficient enough to be mutated or altered or inherited in an abnormal way, which can then subsequently lead to development of multiple myeloma specifically.
Cancer in general, as was mentioned earlier, is an abnormal state where cells alter and become with these abnormal properties, they divide too much, they become aggressive. They start migrating, they start changing position in the body. And this is usually multi-factorial process, meaning many different things play a role. Environment plays a big role, but also genes play a big role. So, it's fair to say that multiple myeloma probably does have some genetic component to it. I mean, we know this because when we look at our patients, we do these "genetic tests" and we talk to our patients about them all the time, including the chromosome reshufflings and including these sort of specific fragments of chromosomes that can break off and reattach, et cetera.
So it's unavoidable question in a way, however, what we can tell our patients today is that if they have a myeloma, that there is no recommendation for them to urge their family members to go and get genetic counseling or to go get screened for any particular genetic mutation. That is not to say that over time, we may not potentially identify a stronger genetic link to myeloma occurrence compared to what we currently know. In fact, just last week, I saw a patient, in fact, both Sarah and I saw patients from the same family, brother and sister, without going into details of course, both of whom have myeloma, both of whom have four additional siblings who have cancers and whose parents also both have cancer.
So this is a big question mark, and this is a big flag about what potential problem is happening here. Is it genetically based, et cetera? But it's important to know that there's no way in which we recommend that either patients or their family members need to go and get genetic counseling and genetic testing like in some other cancers. For example, breast cancer, some forms of colon cancer and other cancers certainly are associated with sort of single gene mutations or lesions that are sufficient enough develop the whole cancer.
Dr. Omel: That's a very good answer. In my myeloma support group in Grand Island, I had a patient that died of myeloma. His father died of myeloma. And if I remember right, I think he told me that his grandfather, believe it or not, three generations all had myeloma. So, there must be some type of hereditary basis, but we just really don't know what those genetics are right now. It's a very good answer to a tough question.