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We are so confused…..

Home forums Patient Message Board We are so confused…..

Viewing 3 posts - 1 through 3 (of 3 total)
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  • #3310
    Barb1962
    Member

    Good morning,
    Would like to say that this site has been so informative and I also told Dr. Letendre that he was on the MDS site as “Centers of Excellence”. He smiled and said “He didn’t know that”. Anyway, they are now questioning whether husband has MDS or not. The blood counts and Chromosome testing is just not the way they should be for MDS. They just aren’t sure what’s wrong. Before this last appt. his hemoglobin was dropping and that was the only thing I noticed that was off. But now I guess there are other counts that are off including his platelets that are dropping. They are wondering if all this has to do with his bone marrow and non-hodgkins lymphoma. He received a blood transfusion, he feels a little better, but he said he thought he would feel better then he is. I’m not sure how long a transfusion takes to make you feel better. His white count is 120, but they say that’s because he had his spleen removed. This Tues he will go back to mayo and have a chest x-ray and CT. I guess we wait and see. The up’s and down’s of this disease is mind boggling.

    Barb

    #3311
    sarah
    Member

    Good Morning Barb,
    I agree the up’s and down’s are mind boggling. Maybe you will know more after next weeks appointment. Take it one day at a time.Hope he feels better soon.
    Sarah

    ,

    #3312

    Hi Barb,

    Hope they get their Dx worked out and it isn’t MDS! On the transfusion time, I begin to feel better almost immediately. The day after, I feel like m other self before MDS and it is great. This lasts for a few days and then the Tx starts to wear off. I generally have to start thinking about another one in 6 to 8 weeks, sometimes longer sometimes shorter. It depends on the numbers I see from my CBC’s and the general way I feel. My Drs usually let me decide when I need them, though not always.

    Bill

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