Hello @glynis, sounds like you’ve been diagnosed with myelofibrosis (MF), which I’m sorry to read. I was diagnosed last year with a related Myeloproliferative neoplasms (MPN), Polycythaemia vera (PV), so I’ve read up a bit about MF as my blood cancer can transform into that.
Although our MPNs are rare in themselves, MF is rarer still as I’m sure you know from your readings. Have you looked through the Blood Cancer UK information about MF? It’s really helpful, and all based on clinical research:
Although the fatigue with these MPNs is often no joke and can even be disabling, being on watch and wait AKA active monitoring would be my ideal. Weirdly enough, active monitoring is considered treatment in that you likely don’t need any other invasive type of intervention yet while your blood cell numbers and bone marrow are observed over time.
I’d be tempted to ask your haematologist about your care plan and what to expect going forwards in terms of what other treatments you might expect. But I think you’re wise to avoid googling MF as there’s a lot of inaccurate prognosis information out there! Maybe stick to blood cancer organisations. LLS have some great information as well, although it’s an American blood cancer organisation so spellings are different (although treatments seem to be pretty much the same).
Should you be interested, I attended a blood cancer conference earlier this year and there was a Myeloproliferative neoplasms (MPN) specialist with lots of experience who shared loads of interesting facts about our MPNs. Here are my notes from the conference.
Let us know how it goes with your appointments and fact-finding. I hope you continue to stay on watch and wait!