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Old Fri Jul 27, 2012, 02:27 PM
PattiDean PattiDean is offline
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Join Date: Jul 2012
Location: Clearwater, FL
Posts: 171
Hi Birgitta,

Thank you for the information on Dacogen and Revlimid. I try to read as much as possible, but I don't get that much time to do research. As I said, Dean is going to the oncologist office seven days a week for lab work and Neupogen, also to the hospital for transfusions when it is needed. This morning we had good news during our visit, Dean's counts have stayed the same, unfortunately no change in the WBC, but everything else, RBC, platelets, HGB, are not going down.

Wish the Neupogen would begin working, the WBC is 0.7, which is better than a week ago when it was 0.3, but I was hoping it would go up more after almost two weeks.

In my heart I think I know that the outlook for Dean isn't good, but he doesn't know that. His oncologist is a very caring and compassionate man, he will do all he can to help Dean, even meeting us at the office on weekends. We have his home telephone number and beeper number and he said to call him anytime we need to.

Is it unusual to be on both Dacogen and Revlimid. Dean didn't have any problem with Dacogen during his week of treatment, but two days afterwards he began twitching and became extremely weak, the next day he was in the hospital and all his counts were very low.

Dean is not on Revlimid yet, we are waiting to see if we can get assistance since Dean doesn't have prescription drug coverage, he receives his medications through the Veteran's Administration, we have also contacted them for help. We have been waiting two weeks, keep calling to find out what is happening and we get the same answer, "still working on it". Hope we don't have to wait too much longer.

Hopefully Dean's platelets will increase when he begins Revlimid. I know his doctor will keep a close eye on him and will try something different if he sees a problem.

I am not sure if I could inject Dean's Neupogen, thankfully the doctor has not suggested it.

Thank you again for all your help and information, it does help so much.

Patti
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Dean,age 76, dx MDS, RAEB-2, 17% blasts, June 2012 - May 2013 - Dacogen with Neupogen and transfusions as needed. End of May 2013 Dacogen stopped working. BMB July 2013 shows RAEB-2 and severe Myelofibrosis. Passed away September 30, 2013
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