[Karen]

Maintenance: Revlimid/dex vs. no treatment?

by Karen on Wed Jul 06, 2011 3:44 pm

Hi everyone,

I'm now in my last cycle of the clinical trial I've been participating in--this was 8 cycles of Revlimid/Dex/Velcade. I had a break in there for a stem cell harvest, but my doctor feels I will not need a SCT in the near future, "possibly never."

My blood work numbers are all very good; I don't have the particulars here, but the doctor says the protein levels, etc., are normal, and that anyone who didn't know I had multiple myeloma would not be able to tell from looking at these results.

I had a bone marrow biopsy back in December, prior to starting treatment, and the levels were about 15%. I'm having another on 7/29 and the doctor feels pretty confident that the number will have gone down to the single digits. At that time he'll officially tell me what sort of remission I'm in but he said at my last visit that he was thinking complete remission.

The main way the multiple myeloma has affected me is in the bone lesions; my upper arms and shoulders are primarily affected, and I broke my scapula in November. I had 8 rounds of radiation in January and the scapula has healed nicely, according to the orthopedic oncologist. I'm taking Zometa for the bones and my last few visits with the orth.oncologist have shown that things are stable, no lesions other than the ones that were already there.

At my last visit with my hematology oncologist, we discussed future treatment. The trial includes going directly to a maintenance regimen of a lower dose of dex plus Revlimid. As long as I respond well to this, the trial pays for the drugs (I do have a good health insurance/prescription drug plan, so I don't *have* to stay in the trial just to be able to get the medication.)

My doctor brought up the issue of long-term use of Revlimid leading to possible occurence of secondary cancers. However, he said this is rare and that studies have found that continuing with the drug therapy has been proven to extend survival. Given my relatively young age I would certainly like to live as long as possible, as we all would. On the other hand, getting this cancer has made me much more worried about developing other forms of cancer down the road. Of course, I know this is possible even without my taking Revlimid.

Does anyone have any advice or can you point me to studies that might have looked at this issue, maintenance therapy with Revlimid for someone who is not post-transplant? Is the fact that my disease is Stage 1, low risk, of any relevance?

Thanks!

Karen

[Dr. Edward Libby]

Re: Maintenance: Revlimid/dex vs. no treatment?

by Dr. Edward Libby on Thu Jul 07, 2011 11:01 am

Hello Karen,
It sounds as though you had fairly aggresive disease with the multiple fractures. I am sure you do not want to see a return of the myeloma. At this time most myeloma experts are continuing to recommend maintenance therapy (usually with Revlimid). The biggest benefit is a much longer time to relapse for patients on maintenance Revlimid.
This recommendation is based on the results of several trials. If you go to the "News" section of the Beacon and search for "secondary" there is an excellent string of articles for you to read on this subject. My recommendation is to stay on the research study and follow its pathway. There will be ongoing intensive reviews of this topic for the next few years and the FDA is going to study the issue as well. As far as I know nobody feels that the evidence found so far warrants the discontinuation of the use of maintenance therapy in myeloma patients.

[Karen]

Re: Maintenance: Revlimid/dex vs. no treatment?

by Karen on Thu Jul 07, 2011 2:27 pm

Thank you for your reply, Doctor Libby.

Actually, I have only had one fracture, of my right scapula. The bone lesions were confined to my femurs, upper arms, and shoulders, with the right arm/shoulder being the area most seriously affected. However, you're right, I definitely don't want to see a return of the myeloma! I will definitely read through the materials you've recommended. Your comments are reassuring and helpful.

Karen

[Christina]

Re: Maintenance: Revlimid/dex vs. no treatment?

by Christina on Mon Jul 11, 2011 11:13 pm

I have a question .... I was on rev / dex for 9 months. This was after a relapse. I was in CR for 4 years after a sct. ( no treatment but aredia,). So in month 5 of this treatment I achieved CR , no M protein detected. We went 4 more months and then decided to go off rev/ dex. What do people think? Should I suggest a low dose rev/ dex? My hem/ onc didn't think this was necessary and to go off all meds for a while except aredia. Last year, when I relapsed my bmb was 5 %. and m protein at .4 .

So I feel really good, but I see my hem/onc next month and wondered what everyone's opinion was?

Thanks, christina

[Joanne in Natalia Tx]

Re: Maintenance: Revlimid/dex vs. no treatment?

by Joanne in Natalia Tx on Wed Jul 13, 2011 6:21 pm

Hi Christine! I have been on Revlimid/dexo for going on a year in sept.. All of my labs and blood work have all been great. I did not have a relapse after my SCT but was put on it as a maintenance. I take 25mg of Revlimid along with the dexo every 1,8 16, and 21 days while on the Revlimid. I am afraid to get off of this but I guess its time. I have a great Oncologist and trust she is making the right decisions for me. Good Luck with everything and God Bless

[Amelie]

Re: Maintenance: Revlimid/dex vs. no treatment?

by Amelie on Thu Jul 21, 2011 8:38 am

I am following this debate with great interest.
I am living in Denmark where I have a friend who was diagnosed with myeloma last year.
After a succesfull sct in August last year he is doing very well, but he gets no maintenance.

I have twice given him articles on maintenance to show to his doctor, but the doctor refuses to give it to him. I am very much afraid it has to do with the costs. Here medication is paid by the public health insurance but still the doctor has a budget.

Also Revlimid is still not indicated as maintenance in Europe, but Celgene has made the application for approval.

Now my question is: should maintenance be given directly after the sct? Would it make sense at all for John to get it now?

All the best wishes
Amelie

[NStewart]

Re: Maintenance: Revlimid/dex vs. no treatment?

by NStewart on Sat Jul 23, 2011 2:12 pm

I had an ASCT in January of 2010. In May of 2010 my oncologist started me on a maintenance dose of Revlimid of 10 mg a day. 5 days later I had a severe reaction to the Revlimid and my oncologist had me stop taking the drug. I haven't been on anything since then and my blood test results continue to be excellent.

At the time that the Revlimid was stopped my oncologist said that when I needed treatment again that there would be plenty of things that we could try. So, I didn't want the maintenance drugs in the first place and I have felt ok not taking anything. The oncologist keeps a close eye on my status and brings me in early when he feels there is something that needs to be looked at more closely.

[Amelie]

Re: Maintenance: Revlimid/dex vs. no treatment?

by Amelie on Mon Jul 25, 2011 8:15 pm

^Thanks for sharing Nancy! And good to hear you are managing without the maintenance!

So is John but I can't stop thinking if the remission would last longer with maintenance. Impossible to say

Is Revlimid maintenance a standard in the States now?