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Anyone have Myelofibrosis (CMS-HCC)?

Blood Cancers & Disorders | Last Active: Feb 14 3:28am | Replies (24)

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@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!

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Replies to "@gajokos Sure. I’m working from memory, but I would say I had zero symptoms for about..."

@samlupowitz
I saw on your profile that you joined this group 3 years ago, so I guess that's when it all started, right? You mentioned that the jakafi crashed all your levels and you had to discontinue it. So where are you at now with or without treatment for the myelofibrosis?