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Hi @mikecaldwell ,
You make very good points about hemoglobin level being important. Mine have stayed constant at 12.7 plus or minus .1 unit since I was diagnosed with a MPN in January 2025 because of high platelets.
I was told by one oncologist/hematologist and as well as a bone marrow transplant specialist that Hydrea or any other medication for MPN have the side effect of lowering all blood cell types and do not halt progression. That is probably why I have declined taking any of them. I am sure if I would have been told they differently I would have been and would be more open to the possibility of taking one at some point. It is so interesting that we all are told different things or not told at all by our doctors. Maybe that just shows that much about MPNs is still needed to be learned.
Thanks for your thoughts and have a great day!
Replies to "Hi @mikecaldwell , You make very good points about hemoglobin level being important. Mine have stayed..."
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@1pearl Yes, more info on MPNs needed. I do want to clarify that HU does not halt progression. I don't think anything does that except STC and maybe interferons, but the jury's out on that.
What HU *does* do if started before platelet production gets too high is prevent bone marrow from "overwork," thus reducing chances for mutations that cause progression.
Not trying to talk you into taking HU. Just offering info and support to those who do.