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Myelofibrosis w/ JAK2 mutation

Blood Cancers & Disorders | Last Active: 1 day ago | Replies (50)

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I was diagnosed with CMML 9 years ago, and after a BMB they added myelofibrosis to the diagnosis. I started out on hydroxyurea but after a couple of years it didn’t work very well. My white count was 70,000 and my spleen was huge. My doctor switched me to 10 mg Jakafi and I was in a clinical study for a drug that was supposed to shrink my spleen. I quit the study early because of the side effects, but my spleen shrunk by 2/3 even in the short time I was on that drug. My white count has been pretty stable around 30,000 for years and my other counts are a little low but not concerning to my hematologist and I feel pretty good so I count myself lucky every day. I find bad arthritis to be a lot worse and more debilitating than the blood diseases. There are helpful drugs and things like itching and muscle spasms can be dealt with. Definitely not a death sentence by any means.

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Replies to "I was diagnosed with CMML 9 years ago, and after a BMB they added myelofibrosis to..."

@sme225 what is the difference between CML and CMML?