MDS is a bone marrow failure disorder
MDS is a blood cancer
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Welcome to the MDS Patient Message Board Post New Thread

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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Viewing 2 posts - 1 through 2 (of 2 total)
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  • Carol Morton
    Participant

    Dear TAM: I’m writing on behalf of my wife Carol. She was diagnosed with MDS, “low risk,” in April of 2018. We were impressed by your diet and exercise regime and with the fact that you’ve been able to hold this at bay for 5+ years. I know you make no claims for the relationship between your diet, exercise and your present state of health but its impressive and we are anxious to do what we can to maintain Carol’s health. We’ve downloaded your entry under, “salmon,” and think the diet you’ve adopted makes perfect sense. We intend to incorporate it into our life. My wife was a professional ballet dancer and 10 years ago began what turned out to be three hip surgeries. Two replacements and one revision. Carol’s hematologist thinks the MDS may have been as the result of leaving a metal on metal prosthesis in for nearly 5 years prior to the revision. The metal on metal prosthesis shed chromium and cobalt into Carol’s blood stream. By the time of the revision, Carol’s chromium and cobalt levels were fairly high (they should be zero). Fortunately, they dropped significantly following the surgery but, as mentioned, may have been the catalyst for the MDS. Regardless, this is where we are. My wife just turned 74 and maintains a fairly active acupuncture practice. She is 5’6″ and weighs 130 pounds, a loss of 5 pounds since the diagnosis. Carol is quite anemic and in October of 2018 began Procrit to raise her hemoglobin levels. The first two Procrit shots (given a week apart) lasted for three months. Her second series lasted just one month and now she has had her third series. Her hemoglobin was 9.5 prior to the latest injections. We are waiting for the results of a blood test she took today. We worry greatly about the trajectory of this illness and if the Procrit can keep Carol from needing transfusions. Thank you for sharing your diet and exercise practices. We would greatly appreciate your sharing whatever you might be comfortable sharing and being able to touch base with you from time to time. Thank you. Carol & Monte Morton

    in reply to: Luspatercept #44784
    Carol Morton
    Participant

    Thank you so much. Very helpful.

    Sincerely, Carol

Viewing 2 posts - 1 through 2 (of 2 total)

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