[CindyBrown]

Darzalex, Revlimid & dex maintenance: is the dex needed?

by CindyBrown on Wed Dec 13, 2017 1:35 pm

I relapsed over the summer and was placed on Darzalex, Revlimid, and dexa­meth­a­sone (10 mg every Thursday and Friday). I am back in remission I am okay with dealing with the side effects of Revlimid and even Darzalex now that my infusions are not weekly and I get a break from feeling like I have the flu, but I hate the side effects of the dexamethasone (lack of sleep, racing heart, and moon face). Is it really necessary, and common, to do this regimen with dexa­metha­sone? My myeloma specialist feels strongly about keeping the dexamethasone in the mix, but I am wondering how necessary it is. I do know many people on Revlimid maintenance without dexamethasone.

Thanks!

[Shwan]

Re: Darzalex, Revlimid & dex maintenance: is the dex needed?

by Shwan on Wed Dec 13, 2017 4:23 pm

Hey Cindy,

I'm 100% in the same boat and on the same page. I relapsed in August and am doing the same treatment and hate what the dexamethasone does to my body.

I stopped taking the dex on cycles 2, 3, and 4 without informing my oncologist, but I started again because I figure I'd rather deal with the weight / sleep issues and make sure this goes back into remission so I can work out and know with the monthly Darzalex infusions that I'll never have to go back to dex (at least in theory).

I never got a straight answer on why its important to take the dexamethasone, just that it was and the cycles I didn't take dex I wasn't feeling anything different, but obviously my story is anecdotal.

I start my cycle 6 with the Darzalex infusion on Monday, so I've resigned that people will deal with my moon face for about another month.

[mplsterrapin]

Re: Darzalex, Revlimid & dex maintenance: is the dex needed?

by mplsterrapin on Sat Dec 16, 2017 2:48 am

I forget the details of the chemistry, but we were told very clearly by the myeloma specialist as well as a trusted local oncologist that the dexamethasone is an active agent in the regimen and that it would affect the effectiveness of the regimen to remove it. My husband complained about the insomnia and I complained about his mood swings, and they said sorry but it's necessary. They gave him sleeping pills, and it doesn't exactly put him in bed at a normal time, but at least he's not seeing the sunrise anymore.

So I would definitely do more research and/or talk more with your doctor before stopping the dexa­methasone. I don't like the way my husband is on it, but I decided it's better than having him relapse sooner.

[Mike F]

Re: Darzalex, Revlimid & dex maintenance: is the dex needed?

by Mike F on Mon Dec 18, 2017 12:45 pm

I'm not sure about this but maybe it would be possible to convince your doctor to put you on prednisone instead? It's another steroid that's sometimes used for myelome treatment. From what I understand, it's not as powerful as dex from either the treatment or side effect standpoints, but maybe they'd go for it?

Having dealt with dex during my initial treatment prior to the stem cell transplant, I completely sympathize. I used cannabis to help mitigate the issues with it and that helped quite a bit, but it was still a nasty thing to deal with.

[Rscottsutherland]

Re: Darzalex, Revlimid & dex maintenance: is the dex needed?

by Rscottsutherland on Tue Dec 19, 2017 4:44 pm

Hi,

Glad that the Darzalex works!

A couple of years ago, leading up to my stem cell collection, I was told that a more heavy regimen of dexamethasone would get my numbers down further. So at least my myeloma specialist believed / knew that dexamethasone shrunk the tumors.

[ZippyZelda]

Re: Darzalex, Revlimid & dex maintenance: is the dex needed?

by ZippyZelda on Wed Jan 03, 2018 8:17 pm

Hello,

My best guess is that your myeloma specialist is following the Darzalex, Revlimid, and dexa­metha­sone protocol that is approved by the FDA. You can read about it in the official prescribing information for Darzalex (see section 14.1).

Best to you,

ZZ