"No, It's not Graft Vs Host"
Five years ago I was fortunate to receive a stem cell transplant from an unrelated donor. I had Myelofibrosis, an incurable form of blood cancer that often morphs into AML. After the first year of the transplant, I was riding the roller coaster of body deterioration, weakness, and disorientation. I'm pleased to say I have an amazing life now. I would venture to say that after 4 years I am cured; my yearly chimerism tests show I am 100% donor cells and 0% cancer cells.
But there remains a problem that I'm finding in the medical field that happens so frequently it makes me wonder if there are more patients experiencing this? Whenever I have a long-term health issue my transplant doctor believes that issue is GVHD. Without a doubt he is right. I know it, he knows it and the team knows it. But when I go to a specialist or my new PCP they deny that the health issue is GVHD and I am treated at times as if this idea is ridiculous. I already know what they're going to say. They may even laugh at the idea.
I attribute their reluctance to call it GVHD to their unfamiliarity with the transplant process. These health issues have nothing to do with my genes or my past. I've never had these issues before the stem cell transplant and intensechemo treatment. When I leave the comfort of the cancer center and the wonderful transplant team I've had, I feel like some doctors just aren't up to date learning about stem cell treatment. Visits to the transplant team are gradually reduced as a person recovers.
A success story
I am a success story and I'm certainly grateful. Would I receive different treatment options if the doctors agreed my digestive issues are really GVHD? I'm not sure, but I believe there are significant differences in treatment between healthy people that are just aging and people with diagnosed GVHD.
What type of blood cancer are you or your loved one diagnosed with?