[Eric]

Revlimid controversey

by Eric on Mon Apr 11, 2011 11:50 am

I am 6 month post trans here in Albuquerque. I recieved a 2nd opinion from the Mayo Phoenix recently. The Dr there thought I had a very good response and recommended no treatment and a 3 month testing cycle and just watch it. Myeloma below 3% and M protien at .8. IGG was in normal range. My Dr wanted to do clean up* with low dose Rev/Dex and go for CR. Mayo says CR doesn't get you much much more than Very Good Response for over all survivability. With this Rev controversy starting up, would a 2-8 month cleanup therapy put me at risk or are they talking more about being on Rev for years causing the problems. My concern is I don't want to lose what I've gained and can I wait and still do the cleanup later and get a CR? Or does the cleanup need to be done in a certain time from post trans to be effective? Also since thalidomide is being looked at, does this mean pomalidomide might be at risk too? Also, whats your take on Curcumin?

Eric

*maintenance

[herburger@comcast.net]

Re: Revlimid controversey

by herburger@comcast.net on Tue Apr 12, 2011 5:35 pm

My gut feeling is that you should avoid Revlimid as long as you possibly can. Although it has been a life saver for my mother, the side affects can be very serious. She doesn't have the option of a Stem Cell Transplant and Revlimid is really working well to keep the cancer cells at a safe level for her, but her quality of life has definitely declined due the the side affects of this drug. I think you will feel better the longer you can avoid these very toxic drugs. Good luck with your choice.

[Beacon Staff]

Re: Revlimid controversey

by Beacon Staff on Tue Apr 12, 2011 6:54 pm

Eric,

Three people posted responses on Facebook:

Steven Champagne: I had an autologous SCT in Dec 2010 which put me in a very good partial remission. High dose chemo was Melphalan. I am patient at MD Anderson in Houston, treatment. In discussing whether to start maintenance therapy with low dose Revlimid, my physician said the benefits at this point out weigh the chance of a secondary cancer. I am now on maintenance with Revlimid.

Michelle Miki Schumpf Tierney: My hubby was on Revlimid with no dex for almost 4 years...never had a problem. He remained stable and is now off the meds.

Perry T. Clarke: After I got my stem cell transplant in 2005 I was good until october 2008 when they discovered I had a blood clot which resulted in my numbers going back up. Thats when I had to start my Revlimid dexamethsone therapy.