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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 21 hours ago | Replies (399)Comment receiving replies
I have a question. I take 2 baby aspirin a day and down to a phlebotomy every 3 months. I’m doing well with this, just some fatigue and itching comes and goes. Last visit my hematologist/ oncologist suggested I could go on hydroxyurea but I don’t want chemo drugs in my body if I don’t need them, but then I have read that this drug can slow the production of red blood cells in the bone marrow. Does anyone have any information on this.?If something can slow the disease, I don’t want to be foolish and not start on it. I am 74 and very active. I’ve tried to not read every little thing into this disease but would love to hear what your Drs have told you.
Replies to "I have a question. I take 2 baby aspirin a day and down to a phlebotomy..."
I will be 69 in July and was diagnosed with PV in April of 2021… Because my HCT was high, I was immediately put on hydroxyurea. I was already taking a baby aspirin and that was also recommended to continue taking.. I did not know what to expect and very concerned about taking a chemo pill.. When you hear the word chemotherapy, you think about potential side effects and how they could impact your life.. I was and still am very active despite having my dose of Hydroxyurea increased to 8500 mg per week.. So far, I have not experienced any known side effects from the HU and have been able to stay very active.. I don’t know how long it will last for me and I know some people have a very hard time tolerating HU.. It seems to be an individual thing… In my case, I have monthly blood tests and the results have been good now for over a year.. I’m not happy about taking these very potent pills, but so far they have been working for me… I hope this helps..
My husband is 67, diagnosed past December. He started hydroxy a few months ago and hasn’t had any side effects yet (I was very worried about side effects). Also 1 80mg aspirin daily. The one change is applying sunscreen regularly and more sun shirts.
Still having phlebotomy to get hematocrit down but the hydroxy seems to help keep it stable and has reduced platelets to normal levels(which was needed).
He is still very active although some fatigue. We hope once phlebotomy stopped fatigue will lessen or even go away.
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I will be paying close attention to the responses you receive. Sounds like you are in tune with your health very active at 74!
For me, I try to avoid prescriptions on a permanent basis and I've been blessed with doctors who help me stay on that track however, I take one medication for life thyroid and the other is temporary for osteo. I take a slew of supplements and 1 low dose too.
I'm in observation stage but doctor believes she will confirm at the end of this observation period.
I'm 65 and you inspired me.