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Jakofi or BMT for Myelofibrosis
Blood Cancers & Disorders | Last Active: 14 hours ago | Replies (8)Comment receiving replies
Hi @davi0937 You’ve had a really great response to the trial treatment you’re taking for MF. That’s fantastic. So it’s understandable that you’re reluctant to add Jakafi to the mix. However, that drug does have a good track record for helping to reduce enlarged spleens with myelofibrosis patients. So it might just be the missing piece for complete treatment for you.
It’s a big step between meds and having the BMT. I’m with @alive on this one. If your MF can be controlled with meds, it’s a lot easier than rushing into a BMT. At 66 you’re still young enough to give the meds a try and potentially go ahead with a BMT later if needed. What has your doctor discussed about the bone marrow transplant?
How long will you be on the trial drug? And can you remain on this drug that’s been so effective?
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@loribmt Thank you for the follow up. The clinical trial physician is very happy with the drug impact on my hemoglobin. She has discussed adding a chemo drug to address spleen enlargement. It’s not to that point yet. The trial drug has not shown decreased efficacy with any of the participants. When I looked at the side effects of Jakofi: high cholesterol, weight gain, secondary cancers(skin), fatigue- it seems like a toss up. When I was first diagnosed last June - the hematologist at HP discussed BMT. I drew a graph of the two paths: vertical was pain and horizontal was time. One graph had a slow increase of pain over time and one had the sharp increase the slow decrease. I know that is simplifying the two options. The BMT could fall, a 20% chance of mortality and the long road to a reasonable life.
I meet with the Mayo BMT provider in July. I have an ongoing list of questions for him. I’d like to know success/failure related to age, comorbidites (high cholesterol) and health status overall. I am interested in hearing from others how they have reacted to Jakafi. If the side effects are relatively easy- dose related etc. I’d also like perspective on post BMT - time to feeling 50%, 70%? Impact of immune system on normal activity. Today I cleaned windows inside/out, planted flowers, picked weeds, cut grass, brought compost to the city lot etc. After a BMT would any of that be possible 3 - 5 years out? Thank you!