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Old Sat Jul 10, 2010, 09:56 PM
launch launch is offline
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Join Date: Mar 2009
Posts: 193
Ron's Watch-n-Wait Ends... New treatment Begins

Hello All...

Unfortuately, we're back in treatment, but, are thankful there are treatment options. We have enjoyed the "Time-Off" of treatment during Ron's short lived "Watch-n-Wait". Many of you may have read my previous posts under clinical trial e1905. I posted under the initial thread the Flowerlady started.

Just an update, Ron was removed from clinical trial (e1904) this year (Apr'10) due to his blood counts being adversly affected after 13 cycles of Vidaza treatment. We began "Watch-n-Wait" and during that time, Ron was monitored for blood count only.

Vidaza was awesome for Ron for about the first 11 cycles. Initially when dx, Ron had 6 chromosomal aberations, and the Vidaza reduced the aberations to only one type, -5q. During cycle 12 Ron really began to get run down and after cycle 13 of Vidaza, Ron's blood counts (WBCs) were suffering and too low to receive treatment when he arrived to begin cycle 14. At this point, Ron's doctor decided it best to remove Ron from the clinical trial and give his bone marrow a rest. After being removed from treatment, the counts started increasing and Ron started feeling wonderful and full of energy.

After just 2 mons, Ron's blood counts started dropping and have steadily dropped over the past month. Initially they were going to do another BMB, but, after reviewing his case and collaborating with Moffitt Cancer Center, it was decided, a BMB would not be necessary at this point due to a recent one he had on the clinical trial schedule. Ron will begin taking Revlimid sometime within the next 2 wks.

Revlimid is pill form and will be delivered directly to our home. It is strictly controlled and you have to go through an interview process to receive the medication. The first interview was paperwork, forms, etc. The following interviews will be conducted monthly over the telephone.

We're not quite sure what to expect, but, have been researching Revlimid and side effects, etc. Right now, Ron's WBCs 1.9, Neut 46%, HGB 10.6, PLT 85. We're really concerned about the dropping PLT especially, but, they are monitoring Ron closely.

His energy level is still good and he's walking 2 miles each day. We're back in ballroom dance classes, so, he's getting exercise there too. He's not on antibiotics, but, is being treated for "Shingles prevention".

Wish us Luck & Keep us in your Prayers. We're keeping a really upbeat attitude! We still serve a Mighty God and he is the Master Physician... it's all in God's Time... So, we continue to walk in Faith!

Hugs, Cindy
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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.

Last edited by launch : Sun Jul 11, 2010 at 07:54 PM. Reason: minor typo
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