Saw my doc yesterday, and he has just put me on Revlimid maintenance, 10mg per day, three weeks on, one week off. I guess that's fairly standard, but he did not add the 'dex' part. Just Revlimid.
From what I have read, that seems to be unusual.
I'm three months out of a SCT [stem cell transplant], feeling great, and according to the tests, am in complete remission.
I do have the P17 deletion.
So; questions:
How many of you are on Revlimid ... without the dexamethasone?
Are there studies that examine the efficacy of Revlimid alone?
I am having some trouble finding literature that examines Revlimid without dexamethasone. Mind you, I'm not all that excited about taking 'dex,' given my pre SCT experience with it, but I'm in a fight here and don't want to go into it with only half the ammunition.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Revlimid (with no dex) for maintenance?
My oncologist agreed to discontinue the dex during my third induction cycle because I was having intolerable side effects. I had a transplant in 8/11 and I have been on Revlimid maintenance without dex since then. So far, (knock on wood along with me:) I remain in what appears to be a complete remission. In my support group I know of others on Revlimid maintenance some with dex and some without.
I also have not seen anything definitive comparing Rev with vs without dex.
My best wishes and good luck to you.
I also have not seen anything definitive comparing Rev with vs without dex.
My best wishes and good luck to you.
Last edited by Tom184 on Fri Jan 10, 2014 1:28 pm, edited 1 time in total.
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Tom184 - Name: Tom
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: January 2011
- Age at diagnosis: 64
Re: Revlimid (with no dex) for maintenance?
Diane -
This is of particular interest to me since we share the same transplant doctor. I am currently not on Rev maintenance, although I may begin again since I have an appointment on Monday. Here's one catch: Our transplant doctor said to me that since I'm in complete remission, there's no need for Rev and the risk of taking it outweighs the benefit. My local oncologist thinks I should take it and after considerable discussion, it was decided that I should. I started 10 mg every other day in October (4 months post transplant) and within 2 weeks my blood count plummeted so they took me off of it. The doc wanted to reduce the dose to 5 mg every other day (equivalent to 2.5 mg/day), but I requested to wait until after the first of the year due to the holidays and the fact that we were moving. So, tomorrow I have another appointment with my local oncologist, and I suspect they will want to resume the 5 mg every other day routine.
I'm puzzled. Should I, or shouldn't I take Rev maintenance? Does the risk outweigh the benefit? Based on posts I've read, those taking Rev maintenance appear to have longer remissions, however the OS survival is not necessarily impacted. I'm confused at this point - should I take the transplant doctor's advice and NOT be on Rev, or should I take the advice of my local oncologist and take Rev? Is 2.5 mg worth it?
This is of particular interest to me since we share the same transplant doctor. I am currently not on Rev maintenance, although I may begin again since I have an appointment on Monday. Here's one catch: Our transplant doctor said to me that since I'm in complete remission, there's no need for Rev and the risk of taking it outweighs the benefit. My local oncologist thinks I should take it and after considerable discussion, it was decided that I should. I started 10 mg every other day in October (4 months post transplant) and within 2 weeks my blood count plummeted so they took me off of it. The doc wanted to reduce the dose to 5 mg every other day (equivalent to 2.5 mg/day), but I requested to wait until after the first of the year due to the holidays and the fact that we were moving. So, tomorrow I have another appointment with my local oncologist, and I suspect they will want to resume the 5 mg every other day routine.
I'm puzzled. Should I, or shouldn't I take Rev maintenance? Does the risk outweigh the benefit? Based on posts I've read, those taking Rev maintenance appear to have longer remissions, however the OS survival is not necessarily impacted. I'm confused at this point - should I take the transplant doctor's advice and NOT be on Rev, or should I take the advice of my local oncologist and take Rev? Is 2.5 mg worth it?
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Revlimid (with no dex) for maintenance?
I think that, most of the time, when people are put on Revlimid maintenance, they are put on just Revlimid, not Revlimid plus dex. This seems to be confirmed by the results of one of the recent polls here at the Beacon:
https://myelomabeacon.org/forum/weekly-poll-current-maintenance-regimen-2013-t2346.html
Also, I believe all the major studies that have investigated whether or not Revlimid maintenance is beneficial have involved just Revlimid, not Revlimid plus dexamethasone.
This doesn't mean that you shouldn't consider the possibility of adding dex to Revlimid if you decide it's worth going on to Revlimid maintenance. I just wanted to help you understand what's common and not common.
https://myelomabeacon.org/forum/weekly-poll-current-maintenance-regimen-2013-t2346.html
Also, I believe all the major studies that have investigated whether or not Revlimid maintenance is beneficial have involved just Revlimid, not Revlimid plus dexamethasone.
This doesn't mean that you shouldn't consider the possibility of adding dex to Revlimid if you decide it's worth going on to Revlimid maintenance. I just wanted to help you understand what's common and not common.
Re: Revlimid (with no dex) for maintenance?
My husband is also 17-, and he is 2+ years post ASCT. He was on Revlimid only for at least a year post transplant. Last spring his m-spike started to nudge up a bit, and they added Velcade back in. No Dex.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Revlimid (with no dex) for maintenance?
Both my transplant doctor and my home oncologist agreed that I should take Revlimid as a maintenance drug post-SCT. I had a very hard time with it. I was taking 10 mg, but because of how it lowered my blood counts, I took it for two weeks instead of three, and often needed three and sometimes four weeks before my counts came back up enough for me to go back on.
I was on it for about two years when my M-spike reappeared and has been slowly creeping up. Finally, a year ago, my oncologist discontinued the Revlimid. It took several months, but my blood counts finally stabilized -- not great, but they are stable. I've now been on no maintenance medication for a year. And I'm used to being tired a lot more than I'd like!
The only time I took dexa was during induction treatment.
I was on it for about two years when my M-spike reappeared and has been slowly creeping up. Finally, a year ago, my oncologist discontinued the Revlimid. It took several months, but my blood counts finally stabilized -- not great, but they are stable. I've now been on no maintenance medication for a year. And I'm used to being tired a lot more than I'd like!
The only time I took dexa was during induction treatment.
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Revlimid (with no dex) for maintenance?
I've been on Revlimid (no dex) maintainance for one year. Five mg everyday (no breaks) for last three months. I'm also interested in studies without dex and different doses of Revlimid. M-spike remaining steady at 0.2.
thanks,
Coach Hoke
thanks,
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Revlimid (with no dex) for maintenance?
I can give you 3 links to fairly recent articles about lenalidomide used as maintenance. My oncologist suggested that I take it ( ASCT one year ago, in remission with a very good partial response) but I decided not to ( so help me God!) Anyway my doctor was going to give me 10 mg and no cortisone.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084644/
( Mayo Clinic)
http://www.nejm.org/doi/full/10.1056/NEJMoa1114083
(The New England Journal of Medicine)
https://myelomabeacon.org/news/2012/05/11/revlimid-lenalidomide-maintenance-therapy-studies-clarify-benefits-and-risks/
(Myeloma Beacon)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084644/
( Mayo Clinic)
http://www.nejm.org/doi/full/10.1056/NEJMoa1114083
(The New England Journal of Medicine)
https://myelomabeacon.org/news/2012/05/11/revlimid-lenalidomide-maintenance-therapy-studies-clarify-benefits-and-risks/
(Myeloma Beacon)
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Revlimid (with no dex) for maintenance?
I've been on Rev for about 16months with no dex. 10 mg, 3 weeks on and 1 off. Counts have been steady and I'm in CR.
It's my understanding that most folks that take it do not take dex with it. I was only tortured with dex during my induction.
It's my understanding that most folks that take it do not take dex with it. I was only tortured with dex during my induction.
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: Revlimid (with no dex) for maintenance?
I'm on Revlimid 10mg only with no day off. Work good the first 4 months, I started on 4/13, now I'm struggling to keep my ANC and platelets up, right now dropped to 5mg with 1 week off, yesterday my platelets dropped to 37. I have blood test 2 times a month, still couldn't keep up with how fast my platelets and ANC dropped. I hope yours turn out better than mone.
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Kaew
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