I am 17 months post stem cell transplant and my MDS has returned. My Dr has tried to convince me to do a Donor Lymphocyte Infusion, but I am resistant to that due to the terrifying side effects and the possible GVHD complications that can result. The comment from my Dr was “it’s like playing with fire! You do t know what you’ll get.” A nurse who knows me told me, “oh, you don’t want to die like that.” I’ve had four Vidaza treatments and now the Dr says that he thinks it might not be working like he’d hoped. I have know all along that MDS is incurable and that IF treatments (including the SCT) work, at best I might have 5-6 years. If the Vidaza has stopped working then it will go into AML. he recently mentioned a clinical trial using CAR T cells(which is taking my own T cells and genetically modifying them) to see if they will be able to produce enough white blood cells to fight the abnormal cells my body is producing now, thus stopping the cancer for a bit longer. I’m wondering if anyone out ther has heard of this trial, or knows someone who has been treated for lymphoma or ALL which is what it was designed to treat! From what I can find there are articles for Drs to read, but nothing in laymen’s terms or any %’s of patients who have received it. The side effects of this are pretty scary as well, and as I haven’t been in any pain with my disease up to this point, I’m not sure I want to do anything that will make me feel worse or suffer or perhaps hasten my death. Any help would be appreciated!
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