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Old Thu May 13, 2010, 10:58 PM
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Join Date: Mar 2009
Posts: 193
Red face Update on Ron. Clinical Trial e1905 w/o MS-275

I've not posted for sometime, so this note is long overdue. My husband, Ron, completed 13 Cycles of Vidaza by injection. He's on a 10-Day protocol, low dose Vidaza, followed by 18 Days off in between cycles. The past few cycles have seemed to really get Ron down some, although he refused to "Give in"... He's planted a small garden, he walks daily approx 2 miles, and he helps out alot around the house (i.e. laundry, etc).

Over the past 4-5 wks, we've noticed his WBCs haven't recovered like they once had been doing. Here's the counts from the past several weeks:

4/21/10: WBC 2.2
4/28/10: WBC 2.0
5/05/10: WBC 1.7
5/12/10: WBC 1.8

Seems once they started falling from 3.8, to 3.2, to 2.8, etc... they never recovered... we just kept watching them continue to fall. The neutraphils are at approx 36%, but, they did what they referred to as a Manual check on the WBCs, and they were below the required "500" count, so, for the first time, after completing 13 Cycles of Vidaza, Ron could not recieve his treatment as scheduled on 5/5/10. We were sent home and told to return in 1 wk, which, the WBCs were checked 5/12/10 with no improvement. The overall number was lower and Ron's Vidaza was once again delayed.

We go back on 5/19/10 to check again. If Ron's WBCs have recovered, then, he will continue on the clinical trial with a 20% dose reduction of Vidaza. If Ron's WBCs have not recovered, then, he will be disqualified from continuing on the clinical trial and will start a different protocol.

We're not sure what to think at this point. Of course we're very concerned, but, we have absolutely no control over the events in our lives right now... we just try to keep our spirits up & we're thankful that Ron's been transfusion free for more than a year now.... (Praise God!). We just try to enjoy every single day. We Thank God for Everday!

God Bless All of you!
Cindy

PS. I'll update all next week....
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Cindy, wife of Ron 66 dx w/MDS(RARS)Feb'09,Vidaza 13mons. BMB 2/10 -5q/increased blasts. Watch/wait May-Jul10. Revlimid Jul-Aug10:A-Fib. BMB Aug18, 12%blasts. MDS to AML. Induction completed 9/21/10. BMB Oct10:CR. Consolidaton:10/25/10. Dacogen Dec27-29. SCT on Hold. Fevers/Nt sweats Jan11.
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