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Old Thu Apr 12, 2012, 05:11 PM
milliken2 milliken2 is offline
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Join Date: Apr 2012
Location: Ellwood City, PA. U.S.A.
Posts: 163
Anyone in Stage 4 MDS?

Hello All;
I just joined the forum today. My husband - 65 - is the one who is afflicted with the MDS. Unfortunately, I think the hospital missed the diagnosis 2 years ago when they did the bone marrow biopsy - and again last fall when they repeated it. He had one done at Moffit in February of this year. and the Dr. there told us he had MDS. Said the slides sent from the Pittsburgh hospital were 'deteriorated' and not usable for comparison. My gut tells me that they were purposely sent that way because they missed his diagnosis, and now he is in Stage 4 MDS - RAEB I.
Though I have been a nurse for many years, this is one disease I never came in contact with - and I am at a loss to help him. His counts are terrible - his platelets today were down to 16,000 - I know - scary level. He is going in for a platelet transfusion tomorrow. Either way - I have no idea what I am in for. He has completed one week of Dacogen therapy and now on his first week off. His appetite is terrible, and of course - with his counts down - he has no energy. I can't get any of the Dr.'s to give me a straight answer - is he at a stage where he should continue therapy - or should we just continue with the weekly transfusions? Help anyone.
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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