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Thread: I took P32 for my "other" (third) disease, Polycythemia

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    Default I took P32 for my "other" (third) disease, Polycythemia

    It's been five weeks since I went to Mayo to take p32, radioactive phosphorus. It is knocking out my platelets, hopefully not all of them (they say the slaughter slows). I have lost 3/5 of the platelets I had five weeks ago. I took it to avoid a stroke, which can happen with platelets over a million, where mine had been for several years.

    Dr.Wong said this would not help my foot pain (pain of PN and vascular narrowing in the little vessels in the toes), but it did! I can now walk several blocks. I can do my housework better, although still sit in the wheelchair to do sit-down chores like loading the dishwasher. Also I am taking half of the anti-histimine I take to stop violent itching, a common thing in Polycythemia Vera.

    It took me a year to get courage to do this. The danger is a 10% or so leukemia chance. But most people don't get leukemia and live longer if they have p32, or at least live more comfortably.

    I rock and roll when I go on my new walks, but who cares?

    Because I have porphyria too, I reacted badly to every chemo I tried.

    Mariel (old MS dx, Porphyria, Polycythemia Vera, Monoclonal Gammopathy)

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    Distinguished Community Member agate's Avatar
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    That's great news about the walking! Juggling a number of disorders surely takes a lot of time and effort but you're managing.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

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    Distinguished Community Member SalpalSally's Avatar
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    So glad it worked for you ((((Mariel)))).
    Love, Sally

    "The best way out is always through". Robert Frost







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    agate 

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    Mariel- It is good to hear from you! And, the news is so good. We needed some good news here.

    Great that you are walking w/o pain. Woo-hoo! For you!
    ANN
    There comes a time when silence is betrayal.- MLK

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    agate 

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    Distinguished Community Member Abby2006's Avatar
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    Mariel, glad it worked out for you

    Abby
    Last edited by Abby2006; 04-22-2012 at 10:22 AM.
    Stand for something or you will fall for anything

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    agate 

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    Distinguished Community Member nuthatch's Avatar
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    Mariel, so glad that the treatment helped you and you're feeling better. Hoping for even more improvement!

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