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Old Mon May 14, 2012, 07:01 AM
milliken2 milliken2 is offline
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Join Date: Apr 2012
Location: Ellwood City, PA. U.S.A.
Posts: 163
Dacogen

Neel;
Earl had had 2 cycles of Dacogen, and so far no change. But, like the ladies have told you - it may take up to 6 cycles before you see improvement. Make sure he keeps hydrated, and keep him away from crowds - even lots of visitors - since he is already in a compromised state. If you don't have them already, get some masks that he can wear if 'strangers' are around - to help protect him from breathing in any germs that may hurt him more. I know Earl doesn't like to wear one - but when we have to go to the Dr - where there are already sick people - I make sure he does.
When we were in Florida - the one time he was hospitalized - his temp went up to 102.8. They had him on Vancomycin through his PICC line. They never did find out where the infection came from. They even removed his PICC line and cultured it as the infectious control Dr. was sure the PICC was the cause - and I was sure it wasn't - because it was me who was cleaning it and flusiing it daily. When it came back negative - she was hard pressed to tell me (the nurses already had told me the results) - and I made her say it twice, because she purposely mumbled it the first time - she didn't want to admit she was wrong. Somewhere, he got gram negative bacilli - and became septic. We have no idea, and neither did they. Does your Dad have a Port in place - or a PICC line in? If so - make sure they are cleaning them well daily - and especially before any treatment is given.
I know Earl's taste buds have changed since he started treatment - he says things have a metallic taste - and of course - his appetite is way down. But - if he decides he wants anything - I run for it - as any nutrition is better than none. Get some Ensure or Boost - and some carnation instant breakfast - try to use the Ensure or Boost for the liquid - add some fruit or ice cream - blend it - and see what he likes - you may have to change the 'recipe' so to speak. Too - you can put the mixture in ice cube trays - and especially when he is feverish - let one dissolve - the cold will help the fever a bit, and nourish him at the same time.
Also make sure he is having regular bowel movements - use a stool softener if necessary - especially after starting the Dacogen - as it will tend to constipate you.
Sorry if I sound like the nurse - but I am - and I guess that will never change.
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.

Last edited by milliken2 : Mon May 14, 2012 at 07:04 AM. Reason: missspelled word
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