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DiscussionMyelodysplastic Syndrome (MDS): Did you have stem cell transplant?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Jun 27 8:12am | Replies (54)Comment receiving replies
Replies to "@mkt24, Myelodysplastic syndromes are a group of disorders caused by blood cells that are poorly formed..."
I contacted MDS after having surgery for a growth in my colon. I now have anemia with low counts of hemoglobin. Too old for stem cell transplants (86). giving chemo a try starting
Monday.
Am 0n Aransep injection 300 mg ( 12 years)
At first they said I was autoimmune said stay out of crowds no church, no restaurants grocery stores,etc.
anemic then had blood transfusion then iron infusions . Wanted to start inquoivi and one or two other high powered and expensive drugs. I said no-I’m not a Guinea Pig. My hemoglobin is holding steady at 10. Have weak days, nausea and headache often . No stem cell surgery or other invasive procedure.
I go to Texas oncology. Just doing best I can. Am 85 years young.
Repair people want to overcharge us elders and cities don’t have transportation for us to get to the many appointments we need to get to for medical treatments. Group homes 0ly transport 12 miles from facilities. Few indoor heated pools. They are excited they provide 3 meals a day for $4,000 month!!!!!
Now I live alone with one day, 4 hours shift, woman to clean house and take me to store or labs for every other week blood draw.
I can no longer walk far because of hip bursitis. Did have various untrained physical therapists but they forget to show up and I really would be better off in a heated pool or have a massage therapist.
Ah well we can keep looking.