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What are treatments for myelofibrosis?

Blood Cancers & Disorders | Last Active: Sep 7 10:50am | Replies (18)

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@snakebite

As far as I know there is no cure for MF. When I was diagnosed I had just turned 60 years old. They told me at Stanford Medical Center that the average life expectancy was 5yr. Treatments were for the most part directed towards symptoms. I tried one route for a while and then switched to a doctor that thought a different path was better. He has moved me around from this to that to something else. Some worked better than others. Some had side effects that were a bit unpleasant, but the overall effect was worth it. After a long run of taking both Dacogen and Vonjo, things reached a point that we needed to stop the Chemo (Dacogen). Within the month things turned around dramatically. My CBC's came up to low-normal. I didn't need any more Blood Transfusions, and my twice a week routine became once a month. This went on for a year, and then turned back around and started dropping very rapidly. Numbers were falling as fast as they could test them. That was about 2 months ago. They started the Dacogen infusions again and put me on Ojjaara. My need for Blood Transfusions has returned. I have a new set of side effects with the Ojjaara vs the Vonjo. I get really dissy with the new drug. I will be 77 yr old in October. So... don't say that they can't do anything about MF! I'm still here. As far as I can see, my quality of life is just as good as most of the other OLD PEOPLE I see fumblin around. Don't get discouraged, and stay positive. I've seen a few "Miracle" drugs come down the road, and for the most part each one has been a little better than the last.

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Replies to "As far as I know there is no cure for MF. When I was diagnosed I..."

it's so nice to hear something so positive. I have been feeling hopless. Thank You

Has anyone been prescribed a pill DONOZOL to be taken twice per day for Mylofibrosis? If so, did it improve your readings, after how long, and what were the side-effects? My Hematologist just switched me from weekly PROCRIT injections because my HGB and other related readings were not reacting after two years. I am 73 years old. Thanks