Hi
I have MF, and tho Ive been a member of this group for about 6 yrs haven’t posted for a while. I’m now being treated at the Marsden in Sutton ( BTW, anyone else seen there?) and as I had sarcomatoid sccs triggered by the rux (excised, radiotherapy) I’m reluctant to take any meds that might make them worse. I’ve seen something somewhere ( can’t recall where- brain fog) that suggests EPO nit a good idea with solid tumours.
I hadn’t developed the sccs when I tried EPO before. It did raise my Hb. But was a huge hassle as needed a personal cold chain. Occasional transfusions seemed s better bet.
Am now being offered EPO again as need more regular transfusions. But am concerned abt scc risk. Haematologist is checking with derm, but that could take time.
Anyone have any experience, research info to help?
rachelthepotter