VickieGelso's Journey with Myelodysplastic Syndrome (MDS)

Survivor: Myelodysplastic Syndrome (MDS)

Patient Info: Diagnosed: almost 11 years ago, Female, Age: 68

  1. 1
    over 7 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 mds. I also had myeloproliferative disease at the same time, which affects platelets. I not only had mds dx, but 2 others along with it! Lucky me huh? in 2012 after many tries with different treatments, it was decided to do bone marrow transplant. So in July of 2012, with my youngest sibling as my donor, we did it.

    1 Comment
  2. 2
    over 7 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 week, based on blood work. You or your SO could give the injections. I was still working while receiving these, and they made me incredibly tired and weak for a few days after them. After this trial, which didn't help, it was on to blood transfusions. I was having one about once a month, for a few months. Hemoglobin just continues to drop after so long, as I was not producing any on my own. Doctor is thinking more to transplant now, (almost 2 yrs after diagnosis).

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    2 Comments
  3. 3
    over 7 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 treatments for 4 months (7 days of treatment with 28 days of rest). The worst side effect was the fatigue it caused, but not enough to interrupt my life. I just took naps when needed. I also was not working at this time, which helped immensely.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  4. 4
    over 7 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, with side effects from intense chemo, isolations, 40 day hospital stay (10 extra due to complications) and feeling icky...I had a great team of nurses and doctors who helped me cope with side effects and pain, and of course family and friends. It was hard but tolerable, presents it's own challenges!

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  5. 5
    over 7 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...sent home on steroids, and multiple antibiotics...in Oct 2013 off steroids, and doing much better.

    1 Comment
  6. 6
    over 7 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 ways to go, till "cured" can be used, but I am happy to be alive, and doing well... Praise God, for His Mercy endures forever!

    0 Comments
  7. 7
    over 7 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 still many restrictions yet, to avoid gvhd reinfection, but I am home and doing pretty well...still not able to work, need immunizations, and build up of baby fighter cells yet...that will come in time I guess. Praise God!

    0 Comments
  8. 8
    about 7 years ago
    VickieGelso's Avatar

    Milestones

    In remission as of a few months now, and at Dr. appt on the 31st, many of my isolation restrictions have been lifted...I can now go out to eat, join the Y and swim, attend a few more parties...Still have precautions to watch for cold and flu season, but this is a big step for me, in my return to normal lifestyle. It has been a long time coming, and I thank God for his blessings!!!

    1 Comment