I heard wonderful things about this list-serve and would love to connect with others with MPNs overseas -- I'm from Canada. I was diagnosed with PV one year ago (thought likely had it for almost 3 years) and I'm having a hard time deciding whether or not to go on interferon. I am currently only on aspirin and doing phlebotomies but I'm very nervous about progression (my hemoglobin and hematocrit have started to go down in the absence of phlebotomies) and would like to decrease my allele burden (which I learned was over 60%, anything over 50% is apparently 'high'). My hematologist is great but he is against interferon.
My concern is that I have also learned several months ago that I have 3 mutations on top of the JAK2 (TET2, CEBPA and BCOR) and I wonder if interferon would work for me or if it would induce progression?
Is there anyone here who has additional mutations beyond JAK2 and has tried interferon with success?
Thank you in advance for taking the time to read my post!