Thank you for your response and thank you for the website. Your answer poses more questions as I was speaking with the donor coordinator. She said she wished there was an easier way by computer! When I questioned the transplant dr. originally about cord transplant, she said I was too big, that there would have to be more than 1 cord, and they did not use them on adults. Is this not true?
I still don't know based on my diagnoses if a transplant is the only way to go.
My primary Oncologist-Hemotologist said I was RAEB-1 (with fibrosis) but classified ISS-2. He said his main concern is on July 2010 my blood was fine ( as always had been) and on July 2011, all blood cells were very low, and dropping.
I am ready to have someone provide a second opinion who is known to be very knowledgable in the field of MDS. Can anyone recommend someone in or about the tri state area? I live on Long Island but would travel to Boston or Maryland if I could get a competitent evaluation.
Again thank you,
Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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