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Old Sat Jul 19, 2008, 07:41 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
He was on daily Neupogen shots for about 4 1/2 months. For the first three of months of this, he had zero white cells. Once his white cells kicked in and his anc count was about 1.5, he went to 3x week for about one month. Then at the six month mark, his white count increased enough that his doc took him down to 2x week. During all of this time (six months), he was fighting bladder issues from the cytoxan (bleeding and virus in the bladder) which would not resolve until his white count was higher. Finally when that cleared we were gonna stop it all together and he came down with shingles so the doc kept him on it till it resolved. So during his first 8 months post treatment he was on Neupogen, but not daily.

For the procrit, he didn't even start it until 20 months post treatment. His doc said his BM needed to be producing some red cells in order for it to work so not until his retic % got up to 1.8%, it wouldn't do a thing for John. We also had his own EPO levels checked and they were well below 500. People who's own EPO level are less than 500 have a greater chance of Procrit working for him. He stayed on procrit for about 1.5 years until we saw that it really wasn't making a difference so he stopped. That was bit unsettling because we watched his red cell drop a bit over two months until his body adjusted and it started to climb again.

I know his doc wanted him off neupogen sooner than later. As you can see, you do need to take into account what is happening along with the WBC. As long as he was fighting something, they kept him on it. Also, John was a very slow responder. His counts were very slow to recover. It took two years for him to be transfusion free.

I hope this helps. I'm sure others can give you their experience with them also. Everyone's will be different I'm sure.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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