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Hi,
I have an appointment at the Hutchinson Center on April 6 with Dr. Deeg. I saw him in 2002 and was diagnosed with MDS-RA, I think the IPSS score was, oh, can’t remember, something about 3-5 year survival (statistically, which I ignored).
My reason to visit is: I’ve progressed in terms of hypoplastic bone marrow in those four years and my local hematologist says I have secondary(mild) aplastic anemia and I also have several autoimmune conditions that probably caused the bone marrow suppression (was on Cytoxan for several years for vasculitic neuropathy).
I have been told they’ve exhausted treatment options for immune suppressant drugs to halt the progression of the neuropathy and vasculitis and my blood counts are consistently low (even with IV iron dextran, I can get my RBC up to 11.0, about 30%)which I’ll take. But my WBC is consistently around 1000-1500 and my platelets stay around 60,000. All ok numbers but I just turned 50 and I know they probably won’t get better on their own. The main thing is my symptoms are worsening, neuropathy in both extremities and legs and arms, autonomic neuropathy (bladder, hearing), bleeding ulcers due to vasculitis, swollen lymph nodes, and decreased kidney function. Yipes.
So, I’m thinking of discussing autologous transplant or possibly cord blood.
Has anyone here felt that the Hutch were responsive in regards to a patient initiating that kind of treatment? I know stem cell/autologous and even allo tranplants are being done more often for autoimmune disorders.
Sorry for the long post and if I hijacked this one
. Compared to what everyone else is going through on this forum, I feel I’m in ok shape but I also know things can progress quickly too. Thanks for any thoughts from the collective wisdom of the board.
