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adean's avatar
adean
Member
12 years ago

Goodbye Tamoxifen hallo Ferama and Zoladex

Hi all, Thought I would give you guys an update on my progress with my rare blood disorder PRV. My treatment of weekly venesection, which is removal of 1-2 bags of blood is not progressing well. My veins are a pain so using the wrist which is bloody painful. A normal red cell count is about 35 mine are 57 and not wanting to drop so as the blood onco says we just keep going. So off to the onco to stop Tamoxifen as I'm too unstable, and now at risk of a stroke! So plan was a hysterectomy with ovary removal but the anesthetist will not touch me because of the instability of my blood counts So now I'm on monthly Zoladex injection and Femara daily. They said try to relax and not stress, yes of course. Hopefully things will get better. Adean, Xxxx
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tamoxifen

10 Replies

  • Leonie_Moore's avatar
    Leonie_Moore
    Member
    12 years ago

    The question is always "Why do good people have all the issues"?  My sisters say that I have had all the challenges because "You can deal with it"..... XLeonie

  • adean's avatar
    adean
    Member
    12 years ago
    Hallo gorgeous leonine i have high red high white and high platelets, was picked up about 4weeks ago when I went to emergency with a clot in the leg 2weeks post a surgery, it was the blood disorder which presented as a clot, they said I was lucky I didn't have a stroke as my blood was so thick, but of course had to come of tamoxifen due to clots as a side affect. Life is never boring! Adean xx
  • adean's avatar
    adean
    Member
    12 years ago
    Hi carol yes it's mostly men who get it in their 60s , I'm 53 , but ny husband did say he always thought I had balls! Yes running to the loo is tricky when hooked up. Adean xx
  • marionmcmurray's avatar
    marionmcmurray
    Member
    12 years ago
    Hi Adean Hope you are travelling along ok. Just another blimp in this journey we are destined to travel! Thinking of you as you go through this tough time with the bloods. I know it is easy to say but remember 1 day at a time and you will get there eventually. Marion
  • marionmcmurray's avatar
    marionmcmurray
    Member
    12 years ago
    Hi Adean Hope you are travelling along ok. Just another blimp in this journey we are destined to travel! Thinking of you as you go through this tough time with the bloods. I know it is easy to say but remember 1 day at a time and you will get there eventually. Marion
  • Leonie_Moore's avatar
    Leonie_Moore
    Member
    12 years ago

    Just looking at posts as I have not been online for some time.  I am sorry to hear about your blood disorder.  Have you had this a while or is it new?  Has the stroke risk come about due to the Tamoxifen?  Praying for a better result for you XLeonie

  • Leonie_Moore's avatar
    Leonie_Moore
    Member
    12 years ago

    Just looking at posts as I have not been online for some time.  I am sorry to hear about your blood disorder.  Have you had this a while or is it new?  Has the stroke risk come about due to the Tamoxifen?  Praying for a better result for you XLeonie

  • Carol's avatar
    Carol
    Member
    12 years ago
    It is easy to,say relax but not always so eSy for us to do. While many would like a higher red blood count i understand the issues. Had thought more common in men likecolleagues of mine. My veins also were an issue. Believe me having blood taken or invusion via hand is even worse. The trick is. Ot must to have a restful nights sleep, no stress likeexhusbands tantrums and selfish nes and above all to have plenty of clear fluids pref water so veins dont collapse. Believe me it is better to run to the loo and have an easier time with needles than the reverse! Your pink sister, Carol
  • Carol's avatar
    Carol
    Member
    12 years ago
    It is easy to,say relax but not always so eSy for us to do. While many would like a higher red blood count i understand the issues. Had thought more common in men likecolleagues of mine. My veins also were an issue. Believe me having blood taken or invusion via hand is even worse. The trick is. Ot must to have a restful nights sleep, no stress likeexhusbands tantrums and selfish nes and above all to have plenty of clear fluids pref water so veins dont collapse. Believe me it is better to run to the loo and have an easier time with needles than the reverse! Your pink sister, Carol