[Ruchi]

Revlimid maintenance without a break

by Ruchi on Fri Sep 06, 2013 11:24 am

Hi All,

My mother has been on Revlimid for more than a year now. She started taking Revlimid as maintainence therapy since August 2012. She had been on 10mg dosage every alternate day till now.

After being diagnosed with non-secretory plasmacytoma in August 2011 in her right femur, she underwent surgery as well as radiation. But as her lambda kappa light chain ratio kept on increasing, so her doctor put her on Velcade for some time and then on Revlimid.

Now her ratio is in normal range, but doctor suggests she take Revlimid 10mg everyday without a break from now on. I know a lot of people in this forum mentioned that they take Revlimid 21 days and then 7 days off. So far she did not have any major side effects but now I am concerned she might, as she will have to take 10mg Revlimid everyday and not alternate day.

Besides, since now her ratio is normal, does she need this much dose? And won't she get immune to the drug? My mother did not have SCT since her diagnosis. The only drugs she received was thalidomide, Velcade and Revlimid.

Is there anybody here who did not have a SCT and on maintenance Revlimid for more than a year without a break?

[annbo]

Re: Revlimid maintenance without a break

by annbo on Thu Mar 13, 2014 8:12 am

I am concerned about the same issue. My husband had an ASCT 2/14/13 and began Revlimid maintenance 3/29/13. He has been taking 10 mg./day without a break. Doctors at an patient seminar I attended said the standard of care is to prescribe Rev at 21 days on, 7 days off in order to give the bone marrow a chance to recover. When we told the oncologist, he said to switch to taking it every other day. But this would not give the bone marrow a rest. What has been others' experience?

Thank you

[Nancy Shamanna]

Re: Revlimid maintenance without a break

by Nancy Shamanna on Thu Mar 13, 2014 9:37 am

HI Annbo, When I took a low dose of Revlimid for a year as 'consolidation therapy' (a similar concept to maintenance), it was for 21 days on and 7 days off. Even at that, sometimes my neutrophil count was too low to continue, and I would have to take a second week off the Revilimid. The dose was also lowered from 10 mg. to 5 mg after I got in to a remission. I found that Revlimid was damaging to my white cell count, and I know that personally I could not have taken it without having those breaks, unless some other medications had been give as well to boost my white cell count. My doctor would just juggle the dosage of the meds so that I could continue with them ... he monitored the situation on a month to month basis. Hope that helps!

[coachhoke]

Re: Revlimid maintenance without a break

by coachhoke on Thu Mar 13, 2014 11:35 am

I did not have SCT. I was treated with Velcade and Dex for 8 months. M-spike 0.9 TO 0.2.
Minimal neuropathy and hated dex. Began JUST Revlimid 15mg, then 10, then 5; now 1.5 on 3 weeks, off one. M-spike remaining constant at 0.2 All other bloodwork ,wbc's platelets etc. have remained in normal range. I have many lytic lesions in my spine but they don't bother me.

I just feel crappy all the time which I blame on the Revlimid. Oncologist wants me on it until progression.

Coach Hoke

[Wayne K]

Re: Revlimid maintenance without a break

by Wayne K on Thu Mar 13, 2014 12:33 pm

I'm scheduled to start a Revlimid regimen of 21 days on and 7 off, don't know the dose yet. This is in response to a rise in light chains and a clavicle break. I haven't had any treatment since a SCT following Velcade in 2010.

This regimen was from my own doctor and the head of the multiple myeloma department at Siteman in STL.

I don't know if this helps, but it is current from doctors who specialize in multiple myeloma.

[Eric Hofacket]

Re: Revlimid maintenance without a break

by Eric Hofacket on Thu Mar 13, 2014 3:10 pm

When I started Revlimid maintenance I was taking 10mg every day continuously. I did this for many months and over time I started having trouble with my CBC counts being low. I was switched to the 21 days on and 7 days off cycle which is what I think most people do and have been on that over a year.

A few months ago it was increased to 15mg after I had my first positive Immunofixation in over a year but I found the fatigue was more than I was expecting and I started having trouble maintaining decent CBC counts so I was put back on 10mg.

This month I went into urgent care during my 7 day off cycle feeling sick and it was found I had a bit more neutropenia that normal. During the 7 day off cycle my neutrophils and lymphocytes counts continued to decline instead of recovering while I was off Revlimid. My Revlimid was stopped and I have been off just over two weeks. I have been feeling a lot better now and will retest CBC soon and if the results are good plan to restart Revlimid again.

With long term use of Revlimid for maintenance therapy there seems to be this balance between taking a strong enough dose to show some benefit and maintaining adequate CBC counts. The clinical trials I am aware of for maintenance Revlimid were for two year periods using the 10 mg for 21 days on 7 day off cycle, which seems to have become the standard of care for Revlimid maintenance.

But there are a lot of others like myself who have been on schedules other than 10 mg for 21 days on, 7 off for various reasons, either their doctors wanted to be a bit more aggressive with higher dosing or to back off on the dosing to maintain CBC counts.

I think this is a bit of an area where the doctors are making adjustments that they are feel best for the individual patient’s case based on the aggressiveness of the patient’s myeloma and their response to side effects of Revlimid and other drugs, especially if the patient is showing signs of some relapse.

I do not know there is a standard of care in these situations, it is still a bit of uncharted territory, and comparing one patient’s treatment to another has to be done carefully because variation of aggressiveness in myeloma and response to drugs and their side effects from patient to patient.