just been diagnosed with mf,not sure how I feel ,google states a poor prognosis but other sites are more positive, just confused about prognosis.
Hi again glyndale one very important thing to do is control your Google searches, Google will give you a 1000 answers and only a few will be correct and up to date.
I don't have Myelofibrosis but I have talked with many folks over my 23 years with my condition who have MF and they are living a good life.
Talking with others with the same condition is important so do check to see if you have a local Maggie's Centre in your area as these folks are amazing and each centre do run monthly Heamatology Support Groups most are online at the moment so you could connect in from anywhere….. the one I attend does have a few folks with Myelofibrosis in it so worth checking.
Clear accurate information is important so do check out MPN VOICE UK for some good information and have various support platforms.
Always around if you need further help or just want to talk
All the very best.
Hello glydale,
I have been in watchful wait since January 2020 when I was first diagnosed and up until now have lbeen asymptotic but now my platelet count and hematocrit that had been rising slowly for a number of years is now dropping fast. My doctor asked for another bone marrow biopsy but so far I have hesitated to suffer that again. So I fear my wait is coming to an end. I am not a candidate for a SCT.
Our Queen had a bone marrow cancer so we are in good company 
