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Anyone have Myelofibrosis (CMS-HCC)?
Blood Cancers & Disorders | Last Active: Feb 14 3:28am | Replies (24)Comment receiving replies
Hi Tim, I was diagnosed with myelofibrosis (JAK-2) in October 2025. Currently waiting for a second opinion from UCSF. Was prescribed Jakafi but because I am symptom-free, and concerned with the medication side-effects, I decided to wait and observe. My platelets remain high (fluctuating around 800-900k).
I would like to hear more about how jakafi is working for you (or anyone else reading this).
Gabriel
Replies to "Hi Tim, I was diagnosed with myelofibrosis (JAK-2) in October 2025. Currently waiting for a second..."
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Good morning.
I’m 71. I was diagnosed with myelofibrosis a few years ago. Was asymptomatic at first, then the symptoms appeared. Weight dropped from around 188 to 138. I was a bag of bones. Had difficulty getting up from the sofa .
Went to MD Anderson in Houston to see about having a transplant. They advised that my liver fuctions were too low vs. the risks from the procedure. U of Miami said the same.
Now treated at MCI / Baptist in Miami. They’re great!
Abdominal discomfort led me to the Baptist ER. PetScan revealed suspicion
for Erdheim Chester Disease (ECD, an extremely rare blood cancer). Biopsies (2) confirmed. So, I have myelofibrosis and ECD - very rare combo. I’d prefer surf and turf. LOL.
But, the good news is, there’s a pill for ECD from Genentech called Cotellic. The pill immediately attacked all my symptoms -symptoms we had thought were from the myelofibrosis.
I’m back to life. 170 pounds. Hemoglobin is 13ish. Not the same person as before the first diagnosis, but back to being me - more or less.
MCI gave me Jakafi last year, which totally crashed my levels. I end up in the hospital in need of a transfusion with hemoglobin in the 6s. I stopped the Jakafi and got better immediately. So, Jakafi isn’t for everyone.