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Hematocrit Continues to Drop After Stopping Hydroxyurea
Blood Cancers & Disorders | Last Active: Apr 15, 2023 | Replies (8)Comment receiving replies
Lori, thank you very much for your comments, which are most helpful. My CT Scan was sent to my urologist for his review, so I'll have more information afterwards. My original thought was can polycythemia vera stop and perhaps turn into anemia or leukemia? I saw a panel of doctors on youtube discussing long-term usage of hydroxyurea where they concluded that 10% of patients every 10 years get leukemia. If appropriate I will post again after getting the results of a CBC blood test this Monday.
Replies to "Lori, thank you very much for your comments, which are most helpful. My CT Scan was..."
I was started on HU in November to lower platelets, but have experienced extreme fatigue, shortness of breath. Mouth sores and hair loss. I’m 83 and in otherwise decent health. I want to stop HU. Dosage has been 500mg daily. Platelets dropped from 612 in November to 270 now. Had bone marrow biopsy and the diagnosis went from ET to prefibriotic myelofibrosis Dr doesn’t want me to stop HU. But I agreed to do 3 times a week to see what happens. The side effects are bad for my everyday life.
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Hi @rjohn3702, Polycythemia Vera is a very slowly developing blood cancer where your body produces too many red blood cells. It’s caused when a random mutation occurs that tricks the bone marrow into over production.
You are correct that PV can sometimes progress into other forms of blood conditions.
I’m not sure what the percentage is of PV patients going on to another phase of the disease, but when compared to the discussion you watched on youtube regarding the long term use of hydroxyurea, I’m wondering if maybe the odds are about the same.
The Hydroxy was important in arresting the over production of the red blood cells. Without it you could have developed some serious and possibly lethal complications such as blood clots, organ and tissue damage. We always have to weigh the risk/benefit of medications and in this case, it was very beneficial for you to be on it.
Four years ago, I had AML, an aggressive form of leukemia and received bone marrow transplant to keep me in remission. It’s been an amazing odyssey but i’m feeling fabulous and living my best life at 69. So I have some experience under my belt in this area. I joke about “better living through chemistry” but that’s what has bought me precious time on the planet. Some of of the drugs I was on had serious potential side effects, but they bought me time that I wouldn’t otherwise be enjoying now! 😉
Don’t hesitate to drop in anytime for a chat if I can help you out with anytime. Good luck with your CBC tomorrow and we’ll hope for the best with the CT scan. Let me know, ok?