Thread: Nutritionist?
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Old Sun Oct 2, 2016, 03:24 PM
Bananamoore Bananamoore is offline
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Join Date: Jun 2016
Location: Chicago
Posts: 15
Yes, you're right, we have had conversations about transplant, right now her doctor deemed her as too healthy for a transplant; he explained that there is a window where she should be transplanted where the benefits outweigh risks, and right now the risks outweigh the benefits, since her blasts are low and she is relatively healthy. This is why we are stuck, it seems that doctors have differing opinions as to when to transplant. It makes "being on the same page" with your doctor difficult, since as you pointed out healthier people tend to take the transplant much better. Congratulations on your success! Doing it before receiving transfusions must have helped, although I'm sure it was a difficult choice. Did your doctors advise you to pursue the transplant early on with the belief that it was the best option? I'd like to meet with someone who has transplanted 5q- patients successfully, the team we are with right now have not had much experience.
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Anna, daughter of Raisa age 63; dx MDS 5q- Jan 2013; receiving transfusions, no other treatment, white and platelets stable but Hg dropping; p53 mutation; started taking Revlimid Jan 2017 5mg every other day, Hg went up but since June 2018 has been steadily decreasing
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