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Jakofi or BMT for Myelofibrosis

Blood Cancers & Disorders | Last Active: 1 hour ago | Replies (8)

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I had bmt and taken Jakafi, but not for myelofibrosis. I was diagnosed with acute myeloid leukemia and had a bmt for that. Five years after the transplant I was put on Jakafi for graft v host disease. When I compare the two, Jakafi was very easy to manage compared to the bmt. I’m still on Jakafi, 5 years later, but on very low dose as my doctor is weaning me off that med. Initially, Jakafi decreased my hemoglobin, and it dipped below normal. I had regular blood work done to monitor my hemoglobin. Eventually, my hemoglobin recovered and I have stayed in the normal range ever since. For some people, taking Jakafi causes a very drastic dip in hemoglobin and they have to switch to a different med.

I would describe bmt as being hit by a freight train. It’s extremely rough on the body and recovery is very long and slow. For me, that was my only option to survive, so I am glad I did it.

I can see how you prefer getting the transplant while you are still young enough and eligible to get it. If your doctors recommend trying Jakafi first, I would do it. You will know pretty quickly if you tolerate it well.

These decisions are hard to make - each takes you in a different direction. Check with your doctor if you can try Jakafi first and then do bmt later, if needed.

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Replies to "I had bmt and taken Jakafi, but not for myelofibrosis. I was diagnosed with acute myeloid..."

@alive thank you so much! Very good plus/minus evaluation. I’m glad you survived the BMT and are getting weaned off of the meds.