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MDS Anemia and Shortness of Breath

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  • #59291
    Cheryl Baker

    One year ago my mother was Diagnosed with MDS. She is now 87. She has been very very healthy all her life. Eating well and walking every day until the symptoms of MDS fell upon her. She is on 5 MG of Revlimid a day. Her blood work has been fairly stable but the Anemia related shortness of breath which is happening all the time except when she sleeps is terribly difficult for her. Her Oncologist has no answers for my parents so my mother continues to suffer through her day. Please please comment on this if you have any recommendations. I must find her help….Please


    `hi Cheryl
    I’m an mds del5q patient on revlimid 5mg. I too have anemia. I have shortness of breath and low energy. I’m only 58. As it was explained to me these are symptoms of the disease and shortness of breath is also a side effect of medication. So there isn’t much you can do about it. I walk as much as I can. Can’t go as far as many my age but the way I see it, I’m still able to do much. I’ve had to except my limitations and do things a bit at a time. I can’t push myself to far or my legs get weak and rubbery. Also the pain and swelling when I over do things isn’t pleasant.
    I’ve decided that despite it all I’m still alive and I can still have quality of life I’ve just had to except that it comes with limitations.
    This may not be the answer you were looking for but I have had to except and accommodate my disability.
    Best wishes to you both

    Roxanne Peters

    Hi Cheryl,
    I have mds/mdpn/cmml.
    I am 54 yrs old.
    ANEMIA and I are OLD friends. Sarcasm
    My anemia was low enough after I have my BMB done that I finally received 2 iron infusions.
    It helped for a while,
    My shortness of breath when I walk exc affects my life, I can not walk very long at all again.
    My family bought me a an electric scootter to use so that I could go out and be a member of society.
    My oncology team are watching and waiting.
    I am told that since I have CMML. there is no treatment at all.
    Ask your mothers dr’ if she is eligible for iron infusion’s.

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