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Male 65 year old farmer with thrombocythemia
Blood Cancers & Disorders | Last Active: Sep 5, 2023 | Replies (43)Comment receiving replies
Hi Farmer Jim. I posted a while back. I’ve had ET for at least 30 years and was on hydroxyurea for about 25. Then was switched to Anagralide. Had a bone marrow biopsy and discovered my marrow was not making red blood cells which are what carry the oxygen to the muscles, etc. That makes me weak but otherwise I feel absolutely normal. I don’t read here of anyone having low red blood count or hematocrit. When my hematocrit gets down to 22, I get an infusion of red blood cells which brings my hematocrit back to 24 to 27. and I can function pretty well. This happens every 2 to 3 weeks. This is the “treatable “ part of incurable but treatable. I’m ok with this for the rest of my life (I’m 88 and healthy otherwise). I do wish I had more energy. Does anyone else have low hematocrit???
Replies to "Hi Farmer Jim. I posted a while back. I’ve had ET for at least 30 years..."
I have been on anagrelide for 14 years and last winter was told that my hemtocrit began to go down. I was feeling low energy. However, I had a healing in Arizona this spring that seems to have changed things. Two weeks after, my blood platelet count had gone down by 200 pts. and my hematocrit was good. I have another appmt. in October so will see if it is still holding. I have been feeling great! You give me hope that I can continue to live a long life! I will be 68 in a few days.
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My understanding is that the meds we take to reduce the number of platelets also lowers the red and white blood cells. So my red and white cells are low as well since I am on Hydrea 1000 mg on 4 days of the week and 1500mg 3 days a week.