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I agree that there are many unknowns about MF, even despite all the advances in research lately regarding MPN's, the prevailing knowledge varies greatly. I saw an orthopedic Dr last week for an ankle sprain, and he had to look up myleofibrosis... he had no clue. And yes, it is interesting to get to look at different experiences and points of view. They say that each MF patient is different. For sure !
I had ET for 17 years had become resistant to hydroxyurea, was on interferon injections for the past 7 1/2 years, and upon being diagnosed that my ET has transitioned to MF am told that I am already at an advanced stage with a prognosis of maybe 8-12 months left - unless this disease transitions further to AML which is very likely, and means a certain shortened end. So why would one commenter question so ardently that one patient has a five year prognosis and suggest a second opinion just because their mother had MF for 30 years ? We are all different and here under different circumstances. I have been waiting for my "urgent" stem cell transplant to be scheduled for over 4 months and the clock is ticking, louder and louder. Finally have a third "approved" consultation at Mayo for Dec 01, 2023. All this delay because insurance bureaucrats know better than Drs. So we keep tackling issues in front of us, do what we can to feel as good as we can to face the next day. As another commenter said, only God knows. Bless you all and may you have favor with all you have to endure.
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You are correct, everyone is different. 16 year ago a routine physical showed that my platelets were sky high. I was diagnosed with ET. and they started me on treatment with Anagrelide. That brought the platelets down, but it also brought everything else down too. So, I was switched to Hydroxyurea. The decline slowed but things didn't come back. A Bone marrow biopsy showed MF and MDS. Things kept dropping and Procrit was added. That helped, and I stayed with that for a while. It finally stopped working and I was switched to Aranesp. That did a pretty good job so I stayed with it. After a good while things were again dropping and Reblozyl was added. Once again things picked up. My goal was to maintain hb at 10 or above. That was a touch and go thing. I spent a good while between 9-10. But, once again things started dropping, biopsy showed a decline, and I was not able to keep hb above 8. I started getting blood transfusions. At first one unit would keep me above 8 for a few weeks but as time went on it was necessary to get them every couple weeks to stay above 8. My spleen was greatly enlarged and they were getting me ready for radiation to shrink it. A couple weeks before the radiation, the oncologist decided to try Vonjo. Within a very short time my pain from the spleen stopped and it started shrinking. It became easier to maintain a hb of 8+. Again, after some time blood transfusions became more frequent and I started infusions of Dacogen. They told me it would take me downhill and they were correct. It made me feel really bad and it drove my numbers down even lower. I got to the point that I needed blood every 1-2 weeks. I was on Dacogen for a year! It finally reached the point where my numbers were so low that they had to take me off of it. WBC was down to about nothing, my hb hit a low of 6.1 and I was basically on my way out. BUT, very soon after stopping the Dacogen my numbers started moving up! My CBC showed improvement week after week. It's now been about 6 months since I had a blood transfusion, and my numbers continue to rise. I no longer qualify for either Aranesp or Reblozyl. I still take Vonjo. My hb is in the 13 range and still moving up! My wbc, rbc and platelets are just about normal and I feel better and have more energy than I can remember. I don't know how long all of this will last but I'm enjoying it to the max. I was out of options when they stopped treatment, and I credit God for help. If it returns there is now a new drug available for me to try. I'll hope and pray it is not needed, but it's nice to know that there is more untried treatment available. I am 76 years old. If things stay like they are now I'll die of Old Age before it gets me. I say: Keep the Faith and never give up!