[RedDog]

Remission treatments other than Revlimid?

by RedDog on Sat May 26, 2012 1:38 pm

My doctor just said that he was going to put me on Revlimid. He also said I was to get blood work every 2 weeks. Does anyone know of any other remission drugs without the bloodwork as I work overseas and getting to a doctor facility that will give me blood work every 2 weeks will be difficult. Any advice is appreciated.

[terryl1]

Re: Remission treatments other than Revlimid?

by terryl1 on Sat May 26, 2012 8:46 pm

Hi, I am on Revlimid as well as carfilzomib and dexamethasone. Due to the well documented side effects of Revlimid, I have my blood monitored weekly as is protocol in my trial. In one month of treatment, I have had scalp and body rashes and a big drop in my white blood count, specifically neutrophil count, necessitating the use of a few shots of Neupogen to get my counts back up. If you are not monitored weekly or more regularly, you could have some serious issues crop up as happened in my case----my white blood count drop occurred in only a matter of a few days. Bottomline, don't take any chances. Good luck. Terry

[Dan D]

Re: Remission treatments other than Revlimid?

by Dan D on Sat May 26, 2012 11:36 pm

So I know that Revlimid is more potent than thalidomide. But what I found interesting based on a comparison of thalidomide and Revlimid is that thalidomide has almost NONE of the hematolgical side effects of Revlimid . But what it does have is a greater chance of neuropathy -- but only about ten percent.

I just wonder why thalidomide is not used more often with a close monitoring of neurological issues,. I seem to recall that some multiple myeloma specialists still advocate its use.

[terryl1]

Re: Remission treatments other than Revlimid?

by terryl1 on Sun May 27, 2012 6:40 am

Hi Dan D,

It is my understanding that thalidomide causes PN in the overwhelming majority of patients when used over time (6 months plus), not just a minority of them. The side effects seem worse than Revlimid. I think it is still used outside of the US more often, where novel therapies don't exist or the national health care systems (Europe) mandate its use first as a cost saving measure given the steep price of Revlimid.

For me, Revlimid has been the culprit in my rashes. now gone thankfully, and my steep drop in my WBC and ANC. I am now in my off week (no chemo) of my first cycle of the carfilzomib (Kyprolis)-Revlimid-dexamethasone (CRD) trial. I find out this Friday if it is working.

Here's another weird tidbit. Your doctor has to order the Revlimid through Celegene for delivery. Celegene does not let even the U.S. NIH itself, or any other entity, keep various doses of Revlimid on hand in case the NIH doctor wants to dose-reduce based on side effects, etc. They can do it with any other chemo (carfilzomib, etc.) or med, but not Revlimid.

So, if you present with a rash or borderline low ANC, the doctor can't just say "We"ll reduce from 25 mg to 15 mg of Revlimid." All they will have on hand is the full dose Revlimid and your trial will be delayed. My doctor says it is frustrating.

Terry from NJ