[freedom99]

My wife has now been diagnosed with MDS for one year now. June 2010
It started with an emergency visit for swelling to her ankles and then the CBC results showed Hg at 90 and PLT at 40. The doctor did some more blood work and waited to see where the counts would go. After another emergency visit for major pain in the legs the blood counts went down more and after a week hospital stay was referred to oncologist in Windsor who after a bone marrow biopsy diagnosed this as MDS in a type 2 severe category with 2 cytogenic abnormalities. One of those abnormalities was 5q deletion syndrome which means that the long arm of number 5 chromosome is missing.
None of this is good news.
After two more biopsies and a round of Vidazza there is no treatment left except transfusions.
The PLT count now June 17 2011 is down to about 11 while getting two transfusions of PLTS per week to maintain a 20 level or more. The Hg count goes down sometimes to 75 and is maintained at 80 with RBC transfusions of one every two weeks.
There are very few symptoms at this point but still the oncologist gives my wife less than a year.
With MDS, reading on the net, it may be possible to maintain platelets at a count as low as 5 and still be in a maintenance mode
Lowering the iron was considered but not carried out because of the risk of exjade causing abdominal bleeding and with low plateletes this would not be good. Besides that treatment with exjade for high risk patients with a short life prognosis is usually not beneficial