[Rneb]

Do you take Revlimid without dex?

by Rneb on Sun Oct 18, 2015 8:38 pm

I take Revlimid 10 mg daily (30 days straight) without dex. Have done it for 2 years +.

I have lots of problems with dex, so I don't take it.

Any one else take Revlimid without dex?

[Edna]

Re: Do you take Revlimid without dex?

by Edna on Mon Oct 19, 2015 3:43 am

I recently had my regime changed and the dex was removed with the alkylator.

I also have a very reduced dose of Revlimid. I think I understand why my regime was changed, but not why dex was removed so soon. Will be asking about this on pending clinic attendance.

[MMFeb16,15]

Re: Do you take Revlimid without dex?

by MMFeb16,15 on Mon Oct 19, 2015 6:42 am

I am on my sixth cycle of Revlimid 25 mg and dex 20 mg one day a week. I have a tough time with dex as it will not let me sleep for forty eight hours, my knee, leg and feet swells, and it makes me hyper and get upset on little things. I am considering reducing the dex dose.

[mikeb]

Re: Do you take Revlimid without dex?

by mikeb on Mon Oct 19, 2015 11:33 am

Hi Rneb,

You're asking a good question that might make a good Beacon poll one of these days.

For my maintenance treatment, I take Revlimid alone. Currently it is 5 mg / day for 3 weeks and then 1 week off per cycle. I had been on 10 or 15 mg / day everyday for about 22 months, but then due to some heart issues that I've explained elsewhere in the Forum, I was taken off Revlimid for a couple of months, then recently restarted at the lower dose.

Early in my maintenance treatment, I asked my doctor if he thought adding a little dex to the Revlimid, to give the treatment added punch, would be something to consider sometime. He answered that he does not consider dex to be a "maintenance" agent. I think that's because he doesn't want to have the patient taking a steroid long-term.

However, I think I have seen several other folks mention in the Forum that they are on some level of Revlimid + dex for maintenance treatment. So this may be yet another treatment area where there are differences of opinion among doctors.

Mike

[Mike F]

Re: Do you take Revlimid without dex?

by Mike F on Mon Oct 19, 2015 12:50 pm

I've been on 10 mg Revlimid without dex for a little over two years now, since my stem cell transplant. I suspect that Mike is correct - it's good to avoid the long term steroid use if possible. Personally, I'm quite happy not to have to take the stuff for the time being.

[Cheryl G]

Re: Do you take Revlimid without dex?

by Cheryl G on Mon Oct 19, 2015 3:09 pm

As far as I can tell, Revlimid maintenance is usually just Revlimid alone, although it is sometimes Revlimid and dex. There was a poll about two years ago here in the forum that reflects this:

"Weekly Poll – Current Maintenance Regimen - 2013"

There also was a similar poll a year before that which showed the same results – i.e., noticeably more Revlimid-alone maintenance compared to Revlimid+dex.

[goldmine848]

Re: Do you take Revlimid without dex?

by goldmine848 on Mon Oct 19, 2015 4:21 pm

I have been taking Revlimid 10 mg alone since March 2014 as maintenance following a transplant.

[dianaiad]

Re: Do you take Revlimid without dex?

by dianaiad on Tue Oct 20, 2015 1:16 am

Mike F...

My experience with Revlimid is almost exactly the same as yours; transplant two years ago this month, followed by 10 mg Revlimid without dex, 21 days on, 7 days off.

I don't think I"d be all that happy adding dex ... until I have to.

[Bar-none]

Re: Do you take Revlimid without dex?

by Bar-none on Thu Oct 22, 2015 10:52 pm

Ditto for me: Revlimid 10 mg maintenance, no dex. In CR since SCT with normal genetics.

Best! BN

[Chris M]

Re: Do you take Revlimid without dex?

by Chris M on Fri Oct 23, 2015 6:36 pm

Hi,

Initially my husband was on 2 years of Kyprolis/Revlimid 25 mg/dex 40 mg when first diagnosed in 2011 (participated in a clinical study). He then took just Revlimid 15 mg after he had reached stringent complete response. This spring, his M-Spike increased slowly over several months, up to 0.4 now. So, his Revlimid was increased to 25 mg and dex was added back in. His M-Spike has stayed stable at 0.4 for the last several months now.

He hates the dex due to the side effects everyone knows all too well! Our understanding from his oncologist/hematologist is that dex can help other drugs work better against the myeloma. The higher Revlimid plus adding dex seems to be helping keep his myeloma stable now, so it seems to be a necessary evil in his case.

Chris M.