What is Myelodysplasia
The myelodysplastic syndromes (MDS, formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varyi...
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I was just recently diagnosed with MDS and was so overwhelmed by the prognosis! He gave me 12-18 months! Kind of poo-pooed transfusions etc and said only thing to do would be another allo BMT. Yes, another! Needless to say, I'm off to the Mayo Clinic in Rochester Wed for a second opinion. I feel too good, a little out of breath upon exertion but that's all. He says my bone marrow has been too damaged from all the chemo and radiation I've had. I was 100% donor in my marrow, but I've lost about 83% of those cells now, 3.5 yrs later. I started out with non-Hodgkins Lympohoma in 2001 and was mis-diagnosed the first time so I'm hoping this last BMB was mis-read also!
Posted on 05/18/09, 04:05 pm |
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So you were given 12-18 months. I was given 1.2 years, which I calculate as 1 year, 10 weeks, 2 days, 19 hours and 12 minutes. That was from September 2008. But I think I am doing OK, and I have a determination to prove the timescale wrong. Others who come up on this site have gone 5 years longer so there is hope, and the best thing you can do is adopt some very strong positive thinking, and steely determination. I think it works. 
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Hi everyone. My last day of work was last Thursday,I am going to try to get into the University of Chicago for a second opinion on treatment. I have just recently been having upper left abdomen pain and exsive bruising. I have been so tired, I feel shakey. I hope they can help me. I was just in early stage in Sept.
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