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What are treatments for myelofibrosis?

Blood Cancers & Disorders | Last Active: Mar 17 10:19pm | Replies (60)

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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

Just a update on my post of Jul 10,2024. It is now1/31/2025. I am still taking the Ojjaara. I take nothing else. I've had a CBC every week, and they are all great! Who knows how long this will last, but for now things are great!

Snakebite, my husband was diagnosed with MF one month ago. I showed him your comments and I want to thank you because it gave him hope and brought tears to his eyes. We know every prognosis is different but without hope we have nothing. Thanks again.