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Living with Illness Coping with disease, getting help, dealing with family, staying optimistic, quality of life, hospice care |
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#1
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Frontline
I saw an interesting, (albeit, somewhat depressing) documentary last night, entitled "Facing Death". You can view it by visiting www.pbs.org and clicking on the "Frontline" tab. I found the written interview with Dr. Groopman reassuring that as an individual patient , you never know whether you may be on the "tail end of the curve" and beat the odds. He also comments on the unpopular decision to not approve Vidaza in the United Kingdom.
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode |
#2
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They called MDS a type of leukemia.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/ |
#3
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I thought it was a good show but maybe they exaggerated the toxicity of the whole Stem Cell Transplant process. How each patient reacts depends on their initial health, the progress of disease before transplant, age, and probably a host of other factors. The show made it sound like every person who gets a stem cell transplant will be taken all the way to near death before getting the actual transplant, with all sorts of complications to follow. For me, so far coming up on Day +60, it has been going to plan. I hardly had any complications before the transplant and none since. But the show was about end of life health care, so you would expect them to use the worse case scenarios.
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/ |
#4
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MDS has sometimes been called pre-leukemia, both because for some patients MDS evolves to AML and because of similarities between the diseases. Calling MDS a "type" of leukemia is playing a little loose with the classifications but for the general public it's "close enough" to explain what type of disease it is.
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#5
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SCT
Hello Jim, I am so glad that you and others have had such a good response to the SCT and I hope things continue to go well. As posted by Birgitta today, there have definitely been advances over the last decade in reducing complications from SCT. Your story and so many others on this forum are encouraging to those that may have to follow that path. The link for the abstract on SCT improvements is www.nejm.org or www.nejm.com., I think.
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode |
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