MDS
I have had MDS for 3 years now. I also have PNH. Nothing was working for me and I was transfusion dependent., with iron over load. There were no matches for a bone marrow transplant and I had been taken off the list after a year long search. All three parts of my blood are effected, hemoglobin platelets and white blood cells. I went to Moffitt Cancer Center in Tampa FL for a second opinion early in my diagnosis. I probably wouldn't be here if not for their hematology department. Last July I had a chemo treatment called ATG and I have been transfusion free ever since. Trust me the 5 days in the hospital were not fun but the results are miraculous. ATG is a equine lucocyte chemo treatment by infusion. My counts go up and down but it stimulated my bone marrow to start working again. It has been almost a year now and I'm told it can last up to three years, so I am very hopeful. It doesn't work for everyone but it worked for me! If your out of options talk to your doctor about it. If your not getting the right answers look somewhere else. Moffitt is great place to start!
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