I just returned from my first 6 month check up at Moffitt Cancer Center near where I live. We are so lucky our mutation is CALR. It is the mutation with the best prognosis with slowest progression.
Go to pvreporter.com. Lots of good info including a list of MPN specialists. You really do need a specialist for this very rare disease.
I still have only light night sweats and sometimes brain fog as symptoms. So minimal my specialist still doesn’t want to start treatment beyond daily aspirin. My diagnosis is Primary MF meaning I did not progress from PV or ET. I’m 78 and live in Orlando, FL. , Moffitt is in Tampa. My Orlando oncologist shares my care with my MPN specialist.
Two other sites I recommend are HealthTre Foundation and a Facebook support group called Myelofibrosis Support Group. The support group is full of people like you and me.
I hope I answered all your questions, reach out any time.