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It's a good idea to keep a notebook/journal
Kathy;
It's a good idea to keep a notebook with the differences you notice in your husband, and get copies of all of his lab work - and keep them in chronological order. This way - if you do see another Doc - you will have all of the records you need to take with you.
Yes - it is definitely an up and down time. My husband turned 66 in May - and he has received 5 treatments of Dacogen. Not to scare you - but so far, it has not helped Earl. But people respond differently.
Learn as much as you can, and know that we are all here to help too. The forum has been a blessing to me - since I never heard of MDS before Earl's diagnosis. I am still learning for sure. And it is probably a good idea to make sure you get your labs drawn at the same place every time - this way there is less chance for discrepancy. Take care, and keep your chin up.
Beth
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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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