Trying to see how long most people last taking revlamid as a maintenance therapy before the side effects become too bad
I started out on 10 mg Revlimid in Jan 2018. Then in Jan 2019 it was reduced to 5 mg. My biggest problem was the low ABS Neutrophils and white blood cell counts. That is why I was dropped to 5 mg. So far, so good on the other counts. My other side effect was diarrhea. I control that with a digestive probiotic and a big bowl of Kashi Go Rise (the one with 13 grams of fiber) every day. My transplant dr. recommended this treatment instead of taking other drugs to control the diarrhea.
I do have fatigue, just not sure if it is from the Revlimid or from the MM or a combination of both.
My doctor is not giving me Revlimid for maintenance. He said a study shows it can cause a secondary cancer. MM is my second cancer.
I don’t want a third cancer.
I didn't develop strong side effects until almost a full year on 10 mg of Revlimid taken daily. After which time I developed a severe rash and swelling. My MM specialist determined I should take a holiday from Revlimid, which was the only maintenance drug I was on. I was off of it for another year before my M-Protein levels started to rise. I am now on Daratumumab, Dexamthazone and 10 mg Revlimid (21 days on 7 off). Revlimid was at 15 mg but my WBC and Neutrophils were too low, so they reduced to 10 mg. I seem to be handling that better this time around. Not sure if the rash/swelling will come back in the future.
I quit after a year and was good for 3.5yrs.
When I first went on Revlimid for maintenance treatment I stayed on it for 10 1/2 months before developing a full body rash reaction. I then went off of all treatment for just over a year before my MM started to rise. I am back on revlimid along with dexamethazone and daratumumab and it has been about 8 months with no real side effects. I think the combination of dex with the revlimid has help control allergic reactions.