[LauraB]

Revlimid maintenance dose - what should it be?

by LauraB on Wed Feb 10, 2016 8:33 pm

Hello Everyone:

My husband has finished his course of 8 rounds of Revlimid, Velcade, and dexametha­sone (RVD) and responded extremely well, with only very minor side effects (mild stomach upset 24-48 hours after Velcade, a few unexplained mild rashes that went away). The last couple of months were the roughest, with him feeling really tired. He is 73 and because he's got normal cytogenetics, we decided to forego the stem cell transplant. His doctor at Dana Farber thinks he's responded very well and seems to think he's got a good prognosis for reaching a minimum 7-year survival expectancy, possibly longer.

But there's a little twist. We recently found out there is a strong possibility his cancer was due to exposure to benzene, as he was one of the veterans stationed at Camp Lejeune in 1960. Plus, he was a diesel engine mechanic in Okinawa, which may have exposed him further to benzene. Veterans stationed at Lejeuene have a 68% higher than average risk of multiple myeloma. He also had bladder cancer several years ago, which is one of the types of cancers these vets are developing.

Here's the thing: He's now on a maintenance dose of Revlimid 15 mg 21 days - 7 day rest. I'm a little concerned about the risk of secondary cancer at this dosage amount.

When weighing risks, I say to myself that his "good" cytogenetics, the fact that he was diag­nosed in early Stage II, and the fact that his family has absolutely NO HISTORY OF CANCER (grand­parents, parents, paternal and maternal aunts and uncles, and all of his siblings have never had cancer) ... Well, this LOWERS his potential risk of developing secondary cancer.

But then there is the exposure to chemicals, the history of his prior cancer, and his age and although our lifestyle is moderate and we are eating all organic food, I wonder if he should be on the LOWEST DOSAGE of Revlimid?

Any thoughts? How does one determine the proper "maintenance" dosage?

Plus, he seems really tired and he is now developing small skin lesions here and there. So far, they turn out to be benign, but they are always cropping up. Revlimid related?

[Ian]

Re: Revlimid maintenance dose - what should it be?

by Ian on Wed Feb 10, 2016 9:09 pm

Hi Laura,

Have you raised your questions with your husband's specialists at Dana-Farber and, if so, what was their feedback?

[JBarnes]

Re: Revlimid maintenance dose - what should it be?

by JBarnes on Wed Feb 10, 2016 11:52 pm

Your risk of cancer doubles when under treatment. So said my specialist. For my age that was 7%, your risk of cancer increases with age. But my risk of the myeloma coming back was higher so I elected to do two years of maintenance. The specialist recommended maintenance for life; 10 months after stopping maintenance, my myeloma returned. If Revlimid was tolerated well, you may want to consider maintenance.

When I was at the transplant center, I met many guys who worked in the oil industry who spent years exposed to benzene.