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.