Hi,
I have been treated for the past year with venesections (every 2 - 4 weeks) and aspirin but my haemoglobin/haematocrit just won't come down. I have headaches, fatigue and drenching night sweats (every night having to change the sheets) as well as intense itching. I have suppressed EPO and a JAK2 mutation - but not the normal ones. The bone marrow biopsy was inconclusive but showed hypercellularity, atypical cells, eosinophilia and fibrosis. In other words, I don't meet the criteria for any one MPN so am being treated for MPN U ("unclassifiable").
Since even intensive venesections don't work very well (apart from relieving my headaches), I have been offered interferon, hydroxycarbamide or ruxolitinib. All three have side effects which my haematologist has explained but I'd love to hear from anyone how these treatments are?
Hydroxycarbamide seems to have the fewest side effects but I don't fancy losing any more hair! Ruxolitinib seems also to have fewer side effects but I don't like the idea of getting opportunistic infections after a year with 4 UTIs and bacterial pneumonia. Interferon is the one my doctor is pushing but warns of flulike symptoms and depression.
I am most keen on getting rid of the night sweats and itching.
I am an otherwise fit 53 year old man working full time and have always been very active (running mainly). I have had high grade bladder cancer too but that is under control.
Thanks for any feedback on side effects!
Cheers
Alex
