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What are treatments for myelofibrosis?

Blood Cancers & Disorders | Last Active: Apr 15 6:55am | Replies (133)

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Profile picture for carolgk @carolgk

Diagnosed with MF 3+/3 in January 2026. This after a frustrating 3 year journey of symptoms, missed by multiple (not Mayo) Specialists. In July 2025, I was Diagnosed with CMML-1 with low blasts. Local Oncologist referred me to Mayo in late December.
Mayo Oncologist picked up on the MF symptoms immediately. Ordered my third Bone Marrow Biopsy.
Cannot convey how thankful I am for the Oncologists at Mayo Clinic.

I am in process for BMT now, donors identified and testing underway. Hopefully to occur in about 2 months.
Im 63, otherwise healthy except Rheumatoid & Osteoarthritis. I had a Bone Density Scan in January, no problems.

Upon MF diagnosis, Mayo Oncologist put me on VONJO as I was having significant symptoms. In just two weeks, I felt like a new person, by 6 weeks (now) I feel better than I have in 3 years.
I consider VONJO nothing short of a miriacle drug.

I still have some Intense Itching and Bone Pain episodes but those symptoms are much easier to manage when you can breathe well, sleep well and my Spleen is not uncomfortable. After losing 50 pounds, I have gained back 5 pounds.

There are multiple medications to treat MF and symptoms. Your Oncologist will determine what you need, if anything. Wishing you the best possible outcome.

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Replies to "Diagnosed with MF 3+/3 in January 2026. This after a frustrating 3 year journey of symptoms,..."

@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

@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!