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How did you make the final decision to begin HU protocol for ET?
Blood Cancers & Disorders | Last Active: Jan 22, 2023 | Replies (75)Comment receiving replies
I am 65 JAK2 positive ET. My hematologist has me on low dose aspirin (1 per diem) and 500 mg Hydrea per diem. We monitor my labs and when my platelet counts go down we hold off on the Hydrea. When the platelets get back up to 600, back on the Hydrea. I have no side effects and we are not stessing my health by waiting for extremes. I've only been diagnosed for a year, but my hemo has another patient that has been on the same course of meds as I without any major side effects. All of our journeys will be different but I prefer not having the wild swings in my platelet levels. I agree with @nohrtforme...mostly annoying, but we can live a normal lifespan and I intend to do so. 😘
Replies to "I am 65 JAK2 positive ET. My hematologist has me on low dose aspirin (1 per..."
This is so helpful to read..... seems like going on and off HU is an option. I like that! I will talk with my MPN specialist about this and see what he says. I have for now held off on HU, just for a bit as I am still trying to feel better after they had pulled me off of all HRT therapy and my body is still coming into the new normal ( or so to speak). My counts remain at 570-630 , but I am under 60 so seems a bit less risk for major issues at this point. The headaches are what get me down the most...some fatigue, but way more headaches. I am keeping active as that helps me the most.
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Your hemo's dosing strategy is interesting, and I might ask mine about that. How often do you have to get labs? Mine are every three months. I am CALR+ and somewhat less likely to clot up than JAK2+ patients.
When I was first diagnosed, it seemed like docs were giving patients huge doses of HU and reducing only if they had terrible side effects. Now doctors try to start off with small doses in hopes of finding the lowest effective dose. I wonder if the incidence of leg ulcers might diminish as doctors lower HU dosing?