samcat's Journey with Myelodysplastic Syndrome (MDS)

Patient: Myelodysplastic Syndrome (MDS)

Patient Info: Diagnosed: almost 7 years ago, Male, Age: 65

  1. 1
    • samcat
    • Experience with Myelodysplastic Syndrom...
    over 4 years ago
    samcat's Avatar

    Oh No

    Diagnosed with myelodisplastic syndrome ,not really sure of all the ramifications

    0 Comments
  2. 2
    • samcat
    • Experience with Myelodysplastic Syndrom...
    over 4 years ago
    samcat's Avatar

    Bone Marrow test

    Procedure or Surgery

    Not a big deal, just local tenderness for a few weeks

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    • samcat
    • Experience with Myelodysplastic Syndrom...
    over 4 years ago
    samcat's Avatar

    procrit, simple, easy, and absolutely no help. Did not stimulate bone marrow production.

    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  4. 4
    • samcat
    • Experience with Myelodysplastic Syndrom...
    over 4 years ago
    samcat's Avatar

    Dacogen

    Drug or Chemo Therapy

    Almost died. Any chemo kills of the bad cancer cells, but also kills off your good cells eg. white, red, platelets.The only hope with chemo is that there are enough good cells left to reproduce, and that with the loss of white blood cells, you are lucky enough not to get in infection. Not even a mosquito bite!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  5. 5
    • samcat
    • Experience with Myelodysplastic Syndrom...
    over 4 years ago
    samcat's Avatar

    Infections.

    Side Effects

    After almost dying from infection, massive doses of broad spectrum antibiotics,and the inability for my bone marrow to start working again, and the neuropathy in my arm, hand and leg, 7 weeks in the hospital, and three months using a walker, I sometimes wonder.

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  6. 6
    • samcat
    • Experience with Myelodysplastic Syndrom...
    over 4 years ago
    samcat's Avatar

    Other

    Decision Point

    Just too old and too dangerous for a bone marrow transplant, and really skeptical about the suggestion of lower doses of chemo.

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  7. 7
    • samcat
    • Experience with Myelodysplastic Syndrom...
    over 4 years ago
    samcat's Avatar

    For now, mild pain killers, mild sedatives, FABB tablets, mild sleeping pills.

    Symptom Management

    Appetite ranges from none on some days to very good on others. Blood counts are very low, barely maintaining adequate levels. Have to receive 2 units of blood every 2 weeks. Have to be extremely careful of bruses and cuts, infection could put me right over the edge. Pnuemonia, flu shots are absolute necessity. Simple common colds are scary, have to take antibiotics, which are really somewhat just a preventative against other infections. Colds are viral, and antibiotic resistant.

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