Revlimid

I did Revlimid in the Phase II "open label" clinical trial from March 2003 until February this year. I did 30mg a day at the standard dosing cycle of 21 days on and 7 off. It was what I always called a "low maintenance" drug to take based on it being oral and, after the first six months, I only had to go back to the clinic every twelve weeks.

I had lots of side effects, some just annoying and some that severely cramped my quality of life. I guess the one that bothered me the most was moderate to severe GI problems. They consisted  of IBS like symptoms but at times were textbook symptoms for Crohn's Disease although I never was diagnosed with either of these conditions.  Today, six months after discontinuing Revlimid, I still have intermittent outbreaks of these problems and have to be very careful with what I eat. Granted, some of this can be attributed to the chemo I took in previous therapies, but there's no doubt in my mind that Revlimid seriously aggravated the condition.

So here's my take on using Revlimid looking back on my experience with the drug. If I did it today, not being in a study and having some control over how the drug was administered, I'd make some changes. For one thing, at the early signs of significant GI problems I would have dose reduced. And, if that didn't alleviate the symptoms, I would have made changes to the dosage schedule. For example, instead of the standard 21/7 schedule, I might have gone 21/14. In discussions with my local oncologist, he admitted that he also favored making such changes in cases where side effects were a significant problem. Of course, all this would have to be discussed with your doctor. But I wanted to toss it out to you as an option. Keep in mind that there are some patients who have no problems with Revlimid but if you do my advise is not to do as I did and suffer in silence.

Greg Robinson
Dx IgG Kappa Stage IIIA MM Feb 2000