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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Revlimid maintenance dose

by Maryan on Tue Oct 02, 2012 11:27 am

I took 25mg 1 week on 3 weeks off for a while between stemcell transplants (I had a tandem transplant, an autologous in October of last year followed by an allogeneic in April). I have plasma cell leukemia, this is a myeloma-like cancer, but more agressive. I tolerated it very well, but did develop a large bloodclot in my leg, one of the possible side effects from Revlimid. I then injected myself twice daily with Lovenox until I was in the hospital for the second transplant.


Re: Revlimid maintenance dose

by buddyg23 on Tue Oct 02, 2012 11:49 am

I am on 25 mg three weeks then one off.

Name: Buddy Gilliam
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 6 2009
Age at diagnosis: 49

Re: Revlimid maintenance dose

by Bill H on Tue Oct 02, 2012 12:24 pm

I have been on 5 MG from the beginning of taking Revlimid. Now on my 47th cycle. 3 weeks on and one week off. M protein stable around 8/9. Also take dex. UGH! No problem with the Rev.

Bill H

Re: Revlimid maintenance dose

by Francine on Tue Oct 02, 2012 1:01 pm

Maryan and Buddy, are you both on "maintenance therapy". 25mg is typical when you're initially being treated and trying to knock down the M-spike, but it sounds like a high maintenance dose.


Re: Revlimid maintenance dose

by mayungfer on Tue Oct 02, 2012 1:34 pm

My husband is on Revlimid maintenance dose of 5mg. for two weeks on then two weeks off. He used to take 5mg. for three weeks with one week off, but his absolute neutrophils kept going too low. He had two SCT in 2009 and is still in remission.

Name: mayungfer
Who do you know with myeloma?: Husband
When were you/they diagnosed?: Dec. 2008
Age at diagnosis: 59

Re: Revlimid maintenance dose

by Louise on Tue Oct 02, 2012 1:53 pm

My husband had two SCTs and is in remission. His maintenance is 10 mg Revlimid for three weeks and one week off. Blood counts are good with the exception of platelets--they jump around, but for the most part stay low. His oncologist said not to worry about that--he has labs drawn weekly.


Re: Revlimid maintenance dose

by Julie MM on Tue Oct 02, 2012 2:45 pm

Hello- after my SCT in July 2010, I began with 5mg Revlimid maintenance 3 weeks on, 1 week off. I remained on this level for about 6 months, but I was so tired and my blood levels were always subnormal. My oncologist switched me to 2 weeks on, 2 weeks off and I did much better, but my whites never reached normalcy. Stopped Rev maintenance in June 2012 and I feel much better! Hopefully my body can battle back the Myeloma cells and keep me in Remission without Rev! Time will tell... coming up on my 3 yr diagnosis anniversary in December 2012. Total Rev maintenance was about 20 months. Actually kinda scary not being on any treatment at all! But I am very grateful for my Rev/Dex + Cytoxan + Melphalan + SCT success!!! :)

Julie MM
Name: Julie
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Dec 30, 2009
Age at diagnosis: 50

Re: Revlimid maintenance dose

by Mary Degenkolb on Tue Oct 02, 2012 8:42 pm

I am on Revlimid 5mg. And hopefully I will be able to tolerate the maintaince dose of 15mg. But I keep having issues with the rashes, sore throat, sore mouth, funny smell I must endure that is similar to a box of new band aides that was just opened! Food burns! It is almost as if it is covered in the hottest hot sauce! Even mash potatoes taste like habejaro hot sauce! And by the time I finish the 21 days and start the 7 days with out the Revlimid, I am a mess and dreading the restart. But what can I do. I am in remission and to stay this way, I just gut it out and take it!

Mary Degenkolb
Name: Mary Degenkolb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2011
Age at diagnosis: 54

Re: Revlimid maintenance dose

by BobRobert on Wed Oct 03, 2012 2:41 pm

Anyone in the crowd, that has not had SCT... that is on any type of Rev maintenance? I am new to all of this as the M protien was only found in August 2012. Most of the historical data pre 2006 is just a jumble of confusion. I am also learning that Multiple Myeloma is not just multiple myeloma.... there are so many variations that it should be broken down and all reporting data / trials catagorized. Again anyone ever in the early stages that went on Rev... and no SCT. Some of the well known survivors from clinical trials of REV and pomalidomide from 8-9 yrs ago ... without SCT seem to be doing well. I know that they are the very publicised exceptions... Sometimes we have no alternatives depending on the stage of the disease and kidney/bone issues. Also... have read here about 'Smoldering multiple myeloma' and the use of curcumin... anyone going this route please send me a PM....

It is very helpful to Join (register) in the Forum so that PMs can be sent so as to not violate 'terms of use'...
Also any information about Chromosome13 deletion or translocation of other chromosomes in relationship to Rev maint would be appreciated.

Hope and Health to you all.


Re: Revlimid maintenance dose

by Dr. Ken Shain on Thu Oct 04, 2012 12:17 am

Maintenance Revlimid as dosed in the two New England Journal of Medicine articles reporting the results of the phase III randomized control trials for maintenance Revlimid was 10 mg daily (5-15mg)- Attal et al NEJM 2012 -IFM2005-02 & McCarthy et al NEJM- 2012- CALGB100104.

The IFM study Attal et al. also included a post transplant consolidation with Revlimid/dexamethasone prior to single agent Revlimid -- again, at 10mg daily.

Generally, i initiate maintenance therapy at least 3 months post-transplant and after count recovery at 10mg daily. Though I do have some patients receiving Rev 1-21 of a 28 day cycle. I like to focus on the fact that in the setting of maintenance therapy is personal. Tolerance is a key point. So, if you tolerate 5mg daily, then that is the dose for you.

Generally, we continue Rev for 2 years, but I feel that is a moving target and partly the result/reaction to the increased risk of second primary cancers identified in both post HDM-ASCT trials of maintenance Rev and maintenance post-MPR (melphalan prednisone Revlimid) for transplant ineligible patients.
Dr. Ken Shain
H. Lee Moffitt Cancer Center & Research Institute

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.

Dr. Ken Shain
Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor


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