Connect
← Return to Anyone have Myelofibrosis (CMS-HCC)?
Discussion
Anyone have Myelofibrosis (CMS-HCC)?
Blood Cancers & Disorders | Last Active: Feb 14 3:28am | Replies (24)Comment receiving replies
Hi @samlupowitz
I'm curious... When you say "...was diagnosed with myelofibrosis a few years ago. Was asymptomatic at first, then the symptoms appeared. " Would you be willing to share how long you stayed asymptomatic in wait-and-observe mode before opting for chemo pills?
(Anyone one else in the wait-and-observe mode out there?)
Replies to "Hi @samlupowitz I'm curious... When you say "...was diagnosed with myelofibrosis a few years ago. Was..."
@gajokos hi~ I was diagnosed with sMF, in June 2025, but was a little out of breath twice in March and April was just “off” and knew something was up! Since June 2025 many symptoms, but not bad enough to take meds. Trying to eat well, exercise everyday, get good sleep, and doing my best to avoid stress! Forgot to mention I had ET Essential Thrombocythemia for 33 years feeling perfect. I wish you well!! (Just turned 76).
Connect
@gajokos Sure. I’m working from memory, but I would say I had zero symptoms for about a year and half, and then the night sweats and abdominal pain and bone pain in my feet and burning nerve endings in my toes and anemia, and 50 pounds of weight loss came. But, then I was diagnosed with ECD and given the targeted med (not chemo), and all the symptoms went bye-bye. Not sure what symptoms I ever had that would be solely or directly attributable to the myelofibrosis. Probably my slightly enlarged spleen!