MDS is a bone marrow failure disorder
MDS is a blood cancer
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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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  • in reply to: The Final Days #46380
    help4eachother
    Participant

    My heart goes out to those of you who have lost a loved one to this disease. Thank you for sharing your stories. Such a terrible disease with little known about it. Thank heavens there is research going on to solve the mysteries.
    I shared my mother’s story as I suspect she may be reaching the end of her journey. No swelling is present but she spends most of her time in bed. I will learn from all of you who have gone through this with a loved one.

    in reply to: The Final Days #46378
    help4eachother
    Participant

    My Mom is 89 yrs old & was diagnosed with MDS nearly a year ago. She refused to have a bone marrow biopsy due to her age and was not a candidate for treatment with the exception of transfusions due to age & other comorbidities. Her peripheral blood counts include anemia, neutropenia & thrombocytopenia plus blasts showing up in pathology report. She had a blood transfusion which was ineffective and is now Palliative. She is in pain, especially legs & arms and has shortness of breath & chest pain especially with exertion. I am so distressed at watching her go through this and am wondering about prognosis at this point. She is old, has poor mobility & her life has zero quality. Interestingly, she had tongue cancer a year and a half ago despite being a lifelong non smoker, non drinker. Surgery removed the cancer on her tongue. Lymph nodes were removed but were clear. My understanding is that her tongue cancer is unrelated to MDS. Can anyone educate me on prognosis?

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