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Old Wed May 18, 2016, 06:28 PM
Annettec Annettec is offline
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Join Date: Feb 2015
Location: New Brunswick Canada
Posts: 50
Hi Bailie, although not yet confirmed, we expect her oncologist will stop treatment when she sees him on May. 30th. He initially wanted to stop last May but decided to continue as she was still benefitting from her treatment. She wasn't transfusion dependent at all during her first year...but the wheels came off in Year 2. She has been getting 1-2 red blood transfusions every 1 to 2 weeks. And this week, for the first time, she needed platelets ( one bag) but no red blood. I can't say otherwise, she has done a lot better than what we expected when she was initially diagnosed. Vidaza has been a godsend. She has tolerated the treatment quite well and has had very few side effects and for the most part, still enjoys life. This of course appears to be changing... Although she maintains she is feeling relatively well. Her counts have been decreasing consistently for the past 3 months so I sense we're entering a new phase of this damn disease. Am I kidding myself to think she might still be here next year? Her faith and zest for life, along with incredible support by her three sisters have been what has really sustained her! I am in awe of her courage and strength.

Is it possible to survive for a year or more on transfusions alone or does this mean she is transitioning to AML and only has weeks/months.....

I so appreciate this forum..... I will be forever grateful for this support....
God bless everyone dealing with MDS and other marrow diseases.
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