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Myelofibrosis w/ JAK2 mutation

Blood Cancers & Disorders | Last Active: May 21 7:46pm | Replies (50)

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Profile picture for rivieramaya2009 @rivieramaya2009

@khandro100 I was diagnosed in June 2025 with secondary MF after 33 years with ET. Took Hydroxy for a few years and Agrylin for a few years. Decided to stop—-had no side effects on either drug. My BMB in June of this year showed MF. Presently not on any drugs. It hasn’t progressed enough and counts aren’t terrible. I do have headaches, most days stomach aches, and unfortunately now a UTI that requires an antibiotic, which is very hard on the microbiome. I have tinnitus, which may not be related, constipation, fatigue, and feeling “unwell.” Don’t know how to describe it. Haven’t felt well since April. Kinda like the flu w/o fever or aches. Just icky!

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Replies to "@khandro100 I was diagnosed in June 2025 with secondary MF after 33 years with ET. Took..."

@rivieramaya2009 I was at the Infusion Center for a phlebotomy (JAK2, PV)and the nurse asked me how I felt? I told her just “not well, but nothing specific”. She said, “malaise”.
She was right and now I have a word for feeling unwell but not sick. Or, as you put it, “icky”,