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Myelofibrosis w/ JAK2 mutation
Blood Cancers & Disorders | Last Active: Nov 11, 2025 | Replies (48)Comment receiving replies
I too have Myelofibrosis I did a bone marrow biopsy prior to starting Jakafi. They did detect a genetic change that was causing they said this bone marrow issue. I wonder how things went since May 2023 over a year ago. So I have had this diagnosis for over a year.
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@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!