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Old Sat Aug 18, 2012, 02:59 PM
PattiDean PattiDean is offline
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Join Date: Jul 2012
Location: Clearwater, FL
Posts: 171
Linda, I can only answer for Dean, remember we are new at this, it has only been two months.

Dean's counts were extremely low when he had his first cycle of Dacogen on July 9th of this year.

WBC 1.0
RBC 2.71
HGB 9.3
PLT 19

Dean had been diagnosed with RAEB-T the week before he began his treatment, his blasts were 17%.

Unfortunately three days after his Dacogen treatment, Dean's numbers went lower.

WBC 0.3
RBC 3.01 (improved)
HGB 10.1 (improved)
PLT 3


He had to go into the hospital for antibiotics and transfusions of blood and platelets because his HGB dropped to 8 while he was in the hospital for the week. He also received oxygen in the hospital to help him breath, and he was given Neupogen injections everyday for two weeks.

On August 6th, Dean began his second cycle of Dacogen. His counts were

WBC 2.7
RBC 3.23
HGB 9.9
PLT 88

On the last day of this five day cycle, August 10, Dean's counts were,

WBC 6.0
RBC 3.16
HGB 9.7
PLT 180

Dean has not had any problems while on his five day cycles of Dacogen, he actually feels better. A day or two after treatment he feels weak and tired for awhile, maybe two days.

His first cycle was the worse, that is when his numbers dropped and he had to go into the hospital for a week, but his numbers began to improve with the transfusions and Neupogen and he was able to begin his second cycle of Dacogen, and had no problems at all this time.

Dean has not had a follow up BMB yet, so we don't know if there is an improvement. I do have a copy of Dean's BMB and it showed many abnormalities with a poor prognosis. The oncologist did say he thinks Dean is in remission, but Dean and I don't feel that confident yet, we will feel better when we see his second BMB.

We are considering changing oncologist because the one Dean is seeing now, although caring and compassionate, does not seem to offer us information or answer our questions, he didn't even go over the BMB report, just gave us a copy, after I asked for it. This was the first BMB that was done in the hospital when Dean was diagnosed, we just now received the report.

Dean also began taking Revlimid, 15 mg, this week, along with the Dacogen. He is not having any problems with that either. He will take it for 28 days, two weeks off.

Good Luck to you and Al. I feel in my heart that Al is making the right decision. Don't give up hope yet!

Lots of hugs, Linda

God Bless you both.

Patti
__________________
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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