Results 1 to 6 of 6

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

  1. #1

    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)

  2. #2
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Blog Entries


    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 - 5/10.
    Member of this MS board since 2001.

  3. #3
    Distinguished Community Member SalpalSally's Avatar
    Join Date
    Oct 2006


    So glad it worked for you ((((Mariel)))).
    Love, Sally

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

  4. #4
    Distinguished Community Member
    Join Date
    Oct 2006
    Red Sox Nation :D


    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!
    There comes a time when silence is betrayal.- MLK

  5. #5
    Distinguished Community Member Abby2006's Avatar
    Join Date
    Oct 2006


    Mariel, glad it worked out for you

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

  6. #6
    Distinguished Community Member nuthatch's Avatar
    Join Date
    Oct 2006


    Mariel, so glad that the treatment helped you and you're feeling better. Hoping for even more improvement!

Similar Threads

  1. Replies: 6
    Last Post: 02-15-2013, 05:47 PM
  2. New Board is "AWESOME" and Great to See People I Recognize
    By NeuroNixed Craig in forum Multiple Sclerosis
    Replies: 7
    Last Post: 09-21-2011, 09:12 AM
  3. Replies: 2
    Last Post: 09-14-2011, 04:15 AM
  4. "Fur Babies"--photos of members' pets
    By agate in forum Multiple Sclerosis
    Replies: 1
    Last Post: 08-17-2011, 04:47 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts

BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.