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Old 03-24-2005, 03:50 PM   #1
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Polycythemia Vera

Hello. I have read past threads here on polycythemia vera which have helped me with some questions I had.

My husband was just diagnosed with this disease, and we are still learning about it. I was wondering if anyone knew of some good publications (names and authors) on the subject available for sale?

I was also wondering if anyone can tell us anything that we may expect from it?

I'll give you a short background.

He was diagnosed a month ago, and his doctor, although well trusted and respected, hasn't been upfront with a lot of things. The only knowledge we have as of yet are the articles I find on the web. They are rather disappointing, and some raise a lot of questions for me. For instance, his doctor hasn't required him to have regular phlebotomys. Instead, my husband has went twice to the ER to have them done when he was literally bleeding from his eyes and ears. And there are no discussions of meds. (We are in the process of finding a respected hematologist)

My questions I have are: What is the best diet to have (what nutrients do you need to supress?). What are some recommended readings you were given?

I suppose those are the only ones gnawing at me for now. I thank you for discussing this with me.

 
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Old 05-28-2005, 05:15 AM   #2
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Re: Polycythemia Vera

Well as far as the diet i am not quite sure. I do know my mother had it and they put her on hydrea and she developed acute mylogenic luekmia and passed. She had the disease for about 15 years maybe. I just can not understand why there is no cure. What a weird disease. I miss her . Anyway, read as much info as possible. Try to get the latest info. Make sure on the websites you visit the date is 2004 or higher. I hope things go well for your husband. I hope they find a cure soon also. Those websites are very disappointing.

 
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