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No Response from Revlimid- How long to get levels back to were they were when started

This topic has 2 replies, 1 voice, and was last updated 17 years, 9 months ago by Susan C.

Viewing 3 posts - 1 through 3 (of 3 total)

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July 21, 2006 at 5:38 pm #14113

jfensterer
Member

Hello-

My Mom did not have the 5q deletion. Our Doctor thought we would take a shot and put her on Revlimid. She was on for 75 days- She felt pretty lousey, counts dropped as expected. She had 6 transfusions during the process & 2 platlett tranfusions. (Please note, she was not having transfusions before the Revlimid) Just Nupo 2x a week & Aranesp 1 every 2 weeks.
The Dr called it a good, brave effort on Mom’s part…but, it was decided that it was not working for her.
She has been off Revlimid for 5 weeks- since then the counts have come up slightly- platletts are still low.- After she stopped the Revlimid- We had a bone marrow biopsy- all indicators showed that she did not have any changes for the worse.
I guess, what I am wondering (hoping) is that there are some other people out in this forum that did not respond, were not deletion 5q & did eventually get back to where they were before Revlimid
Any phone calls would be accepted as well-5053799360
Thanks, Jan

July 23, 2006 at 2:41 pm #14114

Carl
Member

Jan,

Sorry that your Mom’s counts haven’t improved since discontinuing the Revlimid. Neither did mine and in fact my platelets actually did not rebound to the pre-Revlimid level. Now I am considering other available treatments. I am now RBC transfusion dependent and on Aranesp and Neupogen.

July 30, 2006 at 2:38 am #14115

Susan C
Member

We waited too long for an alternate avenue. Patrick had to quit Revlimid in May because his plts fell to 32, then 22, then 8. The oncologist didn’t treat him with anything. The day he was supposed to go to Stanford he was too sick and had to be taken by ambulance back to Kaiser. A blood test showed 35% blasts. They said it had turned from RARS to critical AML One hematologist said he should start dacogen (that was 7/3), but Kaiser decided to bypass that until he went to Stanford. Thank you Kaiser. They put him on Chemo for 7 days. Today is his first day without Chemo. His stomach is distended and his colon is enlarged and inflamed, he can’t eat…..he is getting plts, blood and plasma. They give him a 20% chance to live. I know I have not helped. But, I encourage you to keep asking people. No doctor is God. I wish you well.

Britt AKA Susan

Patrick was dx march of 06 with MDS secondary to non Hodgkin’s lymphoma.
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