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    Question: Vidaza

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    LindaT wrote on ERC's wall

    My husband did a clinical trial with vidaza at first it didn't looked liked it worked at all.but once he was done he went into remisssion for about a year. Now we are back a square one he is not a candidate for BMT they told us to do all the clinical trials we can find . I hate this disease I feel it has robbed us! We are now in a clinical trial again watching him suffer with the numbers going up and down , i' m angry inside And I can not let it show!

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    LindaT asked a questionMyelodysplastic Syndrome (MDS)

    Why are some doctors so scared of this disease?

    10 answers
    • po18guy's Avatar
      po18guy

      @BarbarainBham Moffitt is indeed an excellent facility. There are some excellent people there. I attended a talk given by Dr. Lubomir Sokol, a hematologist at Moffitt, and he is simply brilliant.

      5 months ago
    • LindaT's Avatar
      LindaT

      Hi everyone!
      It has been a while since I have been here update on my husband he is now in a clinical trial in Sarasoata Florida for his MDS since been on clinical trial he has been getting blood transfusion every 17 days they now have reduced his chemo to once a month hoping he will have transfusions less often he is so tired, gets short of breath. We also have been to the Moffit center but they don't seem to be able to help him. He has what they say is mild MDS he is not a candidate for a BMT because of his other health problems so they have told us to do all clinical trials and that is what he is doing . His last BOne marrow biopsy showed no change Doc says the good thing is it has not gotten worse either. So we pray and try to stay positive! Thank you for all the inputs.

      Linda T

      about 1 month ago
    • macfightsback's Avatar
      macfightsback

      Thanks for the update. Severe anemia is tough! I received blood transfusions 4 times when I initially received chemo and 5 last year with my reoccurrence while on chemo. The fatigue and shortness of breath interfere with even simple tasks which is very frustrating. And it is worse knowing it is coming around again after each treatment. I was on 3 week cycles. Now that they have backed off to once.a month for your husband , maybe he will tolerate treatment better. I hope so.
      Sounds like you are on a hopeful path. I have been told people receive excellent care in clinical trials. Wishing you more good days than not so good days.

      about 1 month ago
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