Myelofibrosis Symptoms and Side Effects | Why Speaking Up Is Vital
Dr. Naveen Pemmaraju emphasizes the importance of knowing your body and sharing all myelofibrosis symptoms and side effects with their healthcare team.
Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program and Professor in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju.
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Transcript:
Katherine Banwell:
So, the symptoms of myelofibrosis as well as the side effects of certain medications can vary greatly among patients.
Dr. Naveen Pemmaraju:
Yeah.
Katherine Banwell:
Why is it critical for patients to share any issues they may be having with their care team?
Dr. Naveen Pemmaraju:
Yeah, exactly what you said. So, those two concepts are tied. Since the disease is so rare and it’s so heterogeneous, not just patient to patient, but within the same patient over the journey of years, that is the reason. So, because of that, that’s why one has to communicate every single thing to the healthcare team. It’s interesting. Something that the patient may not believe is serious, the caregiver sometimes knows, right, team?
So, sometimes the person who’s your loved one or caregiver, “Oh, you know, that’s not-quite-right.” Sometimes the patient knows obviously, and then sometimes the healthcare team may say, “You know, that’s not-quite-right.” I think the not-quite-right thing is the key because that is what supersedes or at least precedes lab testing, X-rays, imaging, and bone marrows, it has to be some provocation. So, what I try to tell people is you know your body best. So, you want to be in touch with yourself, with your body, and anything that isn’t right, don’t be the final judge on that.
Push it up the chain, let your caregiver know, let your doctors know, let your team know, and let them help you decide. Sometimes it may be nothing, that’s fine. Sometimes it may be something. Sometimes it may be something outside of your MPN. That’s another key theme, I think, I mentioned here a couple of times. Anemia is a good example. So, lowering of the hemoglobin. It’s exactly what you just asked me. So, in addition to looking to see if it’s the disease progression itself, okay, fine.
However, could it also be drug toxicities, as you mentioned? So, the JAK inhibitor may be causing the anemia or whatever. Then the third bucket is, could it be anemia of regular life stuff, iron deficiency anemia. Could it be a colon cancer or a polyp that’s hiding there? Could it be vitamin B12 deficiency, hemolysis, immune, or something destroying the red blood cells, etc., etc.? So, you make an awesome point, which is all of that can be alleviated or the ball can be started rolling, if you will, by mentioning it. So, the key is no shame, no silence, and mention everything.
Katherine Banwell:
No silly questions.
Dr. Naveen Pemmaraju:
No silly questions, that’s right.
