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DiscussionWhat are treatments for myelofibrosis?
Blood Cancers & Disorders | Last Active: Apr 15 6:55am | Replies (133)Comment receiving replies
Replies to "Diagnosed with MF 3+/3 in January 2026. This after a frustrating 3 year journey of symptoms,..."
@carolgk Good morning? Thank you for mentioning Vonjo. I will ask my oncologist about it. I have both Myelofibrosis and Erdheim Chester Disease and am on Cotellic from Genentech. It saved me. I had lost 50 pounds - went from around 188 down to 138. After taking Cotellic, immediately got back to around 170 (perfect weight) and most symptoms disappeared. Hope this info helps you. Also … had horrendous thoracic itching years ago. Low dosage Xanax immediately stops it. I take .25 mg Alprazolam (generic Xanax) at night. Zero itching. Maybe try that!
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@carolgk I wish you smooth BMT. I hope to do the same before I turn 70. I’m on a wait and see which is nerve wracking because I really don’t want another mutation beyond the SFSR2 with MPL. Please let us know how you are doing! Best wishes