-
- NeilNZ
- Experience with Myelodysplastic Syndrom...
-
- VickieGelso
- Experience with Myelodysplastic Sy...
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...
-
- VickieGelso
- Experience with Myelodysplastic Sy...
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...
-
- VickieGelso
- Experience with Myelodysplastic Sy...
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...
Went as Expected: Agree Minimal Recovery: Strongly Disagree Minimal Side Effects: Strongly Disagree Minimal Impact to Daily Life: Strongly Disagree -
- babygirl50
- Experience with Myelodysplastic Syn...
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...
Easy to Do: Agree Minimal Side Effects: Agree Minimal Impact to Daily Life: Agree -
- VickieGelso
- Experience with Myelodysplastic Sy...
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 ...
Easy to Do: Agree Minimal Side Effects: Agree Minimal Impact to Daily Life: Agree -
- VickieGelso
- Experience with Myelodysplastic Sy...
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...
-
- VickieGelso
- Experience with Myelodysplastic Sy...
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 ...
Easy to Do: Strongly Agree Minimal Side Effects: Agree Minimal Impact to Daily Life: Strongly Agree -
- VickieGelso
- Experience with Myelodysplastic Sy...
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 ...
-
- merry
- Experience with Myelodysplastic Syndrome...
Symptoms
4 years after diagnosis I'm still doing well. Thankfully it has not progressed into Leukemia or needing Chemo / Bone Marrow Transplant
-
- merry
- Experience with Myelodysplastic Syndrome...
-
- samcat
- Experience with Myelodysplastic Syndrom...
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...