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

    Oh No

    How one day can change everything! I've decided to write about my experience having being diagnosed with MDS in the hope it will hel...

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    1 Comment
  1. over 6 years ago
    VickieGelso's Avatar

    GVHD of gut

    Oh No

    In January of 2013, I had a GVHD episode for the intestines...I was in the hospital for 2 weeks, treating diarrhea, nausea, abd pain...

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    1 Comment
  2. over 6 years ago
    VickieGelso's Avatar

    Remission

    Milestones

    Currently I am in remission, (Oct 2013) with no signs of disease present in bone marrow. I am 100% donor cells now...there are stil...

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    0 Comments
  3. over 6 years ago
    VickieGelso's Avatar

    Bone Marrow Transplant

    Procedure or Surgery

    in July 2012, transplant was done. It was the last hope for a cure, and the only cure! It was the most difficult time of my life, w...

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    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
    • babygirl50
    • Experience with Myelodysplastic Syn...
    over 6 years ago
    babygirl50's Avatar

    Revlimed

    Drug or Chemo Therapy

    Afraid it is beginning to fail.....had 2 transfusions in 2 weeks.......Feels so tired and lousy most of the time. Numbers just won't...

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    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  4. over 6 years ago
    VickieGelso's Avatar

    procrit, subcutaneously every week

    Drug or Chemo Therapy

    About middle of treatment in 2011, started procrit injections to raise hemoglobin levels. These were subcutaneous injections once a ...

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    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    2 Comments
  5. over 6 years ago
    VickieGelso's Avatar

    have Jak 2 mutation with the mds, and myeloproliferative disease as well.

    Oh No

    When I was diagnosed in May 2010, bone marrow biopsy showed not only mds, but Jak 2 present, which is a rare complication assoc with...

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    1 Comment
  6. over 6 years ago
    VickieGelso's Avatar

    Chemotherapy with an IV infusion

    Drug or Chemo Therapy

    It also helps if you have a port inserted surgically, as it saves you many pokes for treatments or blood tests...I had chemotherapy ...

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    Easy to Do: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  7. over 6 years ago
    VickieGelso's Avatar

    Thanksgiving prayer to God...

    Celebration

    Celebrating one year post bone marrow transplant and engraftment 100% of donor cells, with no signs of disease noted! Still have a ...

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    0 Comments
    • merry
    • Experience with Myelodysplastic Syndrome...
    over 6 years ago
    merry's Avatar

    Symptoms

    4 years after diagnosis I'm still doing well. Thankfully it has not progressed into Leukemia or needing Chemo / Bone Marrow Transplant

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    0 Comments
    • merry
    • Experience with Myelodysplastic Syndrome...
    over 6 years ago
    merry's Avatar

    Oh No

    After 3 years of being tired and blood levels being too low to donate blood, my Doctor finally referred me to an Oncologist/Hematolo...

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    1 Comment
    • samcat
    • Experience with Myelodysplastic Syndrom...
    almost 7 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 t...

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    0 Comments
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