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MDS Myelodysplastic syndromes

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Old Tue Jun 11, 2019, 03:30 PM
MPitzele MPitzele is offline
Join Date: Jun 2019
Location: Minneapolis, MN USA
Posts: 1
MDS with 3 or More Chromosomal Abnormalities

Does anyone have any experience with this type of MDS. I am at the low normal end for white, red blood cells and hemoglobin with less then 2% blasts at this time.

It puts me in the intermediate risk classification.

Thanks for sharing if you have information.

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Old Tue Jun 18, 2019, 03:52 PM
Owen M Owen M is offline
Join Date: Apr 2017
Location: High River, Alberta, Canada
Posts: 8
I have MDS Trilineage Hemaglobin WBC and Platelets. I was diagnosed in Oct 2012 with 4/% blasts and watch and wait until 2015. Hemoglobin took a dive and went on Epotine-alpha 40,000 units which I self inject once a week. Hemoglobin came back up but still half of normal. In 2017 WBC went down and then Platelets so started on Vidaza. Blasts at 6%. Have just finished 29th cycle of Vidaza ( 7 on and 21 off dosage 162.5) Blasts 3% 6 months ago. Last CBC MAY 31, Hemaglobin 135 , WBC 2.4 and Platelets 101 although my Platelets jump all over the place and a couple of times have been in low normal this year. Too old for a transplant but have never had a transfusion. A lack of stamina is my biggest obstacle.
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Old Tue Jun 18, 2019, 07:52 PM
Sally C Sally C is offline
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 447
Hi Owen,
Has your doctor done any iron studies? My husband has been in MDS remission for years but recently his reds were a bit low and so was his iron. He was struggling with fatigue as well. He was put on an iron supplement and has been much more energetic. The doctor said the reds were low due to his iron being low and is to be checked again in a few weeks. He is 73.
All the best,
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