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

Revlimid maintenance dose

by jodiw on Sat Sep 29, 2012 12:19 pm

Since my SCT, done December, 2010, my onc has wanted me on Revlimid 10mg daily as a maintenance regime. He started me on 5mg daily with no off week. I tolerated this well. However, every time we try and adjust the dose to 10mg daily, my platelets have plummeted as low as the 30's necessitating stopping the Revlimid. It then takes about about 2-3 months for my platelets to reach over 100 again. After being off the Revlimid again since the middle of June, I have just started 5mg daily again. Hoping the platelets hold up this time. My onc's argument for 10mg daily, which I obviously cannot tolerate, is that there is no literature on the lower dose being effective for maintenance.

If you are on Revlimid for maintenance, can you please let me know what dose you are on, is it daily, or do you have off weeks? Perhaps I can use this information for my argument to stay on the 5mg vs 10mg. I am in sCR at the moment with no M-Spike on immunofixation and normal bone marrow per the most recent bx. However, I am very nervous about not being on any type of maintenance.

jodiw

Re: Revlimid maintenance dose

by Stann on Sat Sep 29, 2012 3:15 pm

That's a great question.
After my SCT's, I went on maintenance 15mg of Revlimid daily. I felt great and thought I was tolerating it well. But blood work showed I was neutropenic, so I reduced to 10mg which helped. But since blood work is still not where it should be, I could see facing the same question as you "does 5mg offer the same protection as 10mg"?

Stann

Re: Revlimid maintenance dose

by coop223 on Sat Sep 29, 2012 4:26 pm

I'm on 10mg Revlimid. Three weeks on, one week off.

coop223
Name: derek cooper
Who do you know with myeloma?: Me
When were you/they diagnosed?: November 2011
Age at diagnosis: 57

Re: Revlimid maintenance dose

by Marie64 on Sat Sep 29, 2012 9:40 pm

My husband is on 10mg, three weeks on and one week off.

Marie64
Name: Marie
Who do you know with myeloma?: Husband
When were you/they diagnosed?: 2010
Age at diagnosis: 45

Re: Revlimid maintenance dose

by Taxm1040 on Sat Sep 29, 2012 10:00 pm

I am on 5 mg rev 3 wks on 1 wk off. I am post sct 5 months. 2 months post, the protein in my blood had not changed much from pre sct. The dr put me on 10 mg rev, on 1 month, could not tolerate it, 2 weeks off and started 5 mg rev. Thurs met with my myeloma specialist at the mayo clinic, to review my blood tests I had on tues. the protein in my blood went down 75 percent, he classifies me in vgpr. I still get side effects, usually the third week on, for about 4 days feel lousy, week off feel nausea and a little fatigue late afternoon. Blood is good, RBI, WBC and platelets. Good luck
Maria
Maria Oneill
diagnosis 08/2011
Sct 04/27/2012

Taxm1040
Name: Maria Oneill
Who do you know with myeloma?: Me
When were you/they diagnosed?: 08/2011
Age at diagnosis: 62

Re: Revlimid maintenance dose

by LisaG on Mon Oct 01, 2012 11:44 am

I was put on a wait and see for maintenance with Revlimid post SCT due to my platelets being low. When finally put on Rev my dosage was 10mg 3 weeks on with 1 week off. This was started May 2012. Since being on REV, I've started having GI issues that don't seem to be getting better. My onc was going to maybe switch me to 10mg two weeks on with two weeks off. I'll find out in December.

LisaG

Re: Revlimid maintenance dose

by Guitarnut on Mon Oct 01, 2012 6:24 pm

I just recently started on 5mg. with no time off. Next month i will bump up to 10. So far so good but I'm not holding my breath!

Guitarnut
Name: Scott Hansgen
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 2011
Age at diagnosis: 47

Re: Revlimid maintenance dose

by coop223 on Mon Oct 01, 2012 7:04 pm

Lisa, I also have GI problems while on the Revlimid. Milk and any dairy produce are taboo for me as I'm now lactate intolerant.

coop223
Name: derek cooper
Who do you know with myeloma?: Me
When were you/they diagnosed?: November 2011
Age at diagnosis: 57

Re: Revlimid maintenance dose

by suzierose on Mon Oct 01, 2012 8:36 pm

Hi jodlw!

" My onc's argument for 10mg daily, which I obviously cannot tolerate, is that there is no literature on the lower dose being effective for maintenance."

He's right. BUT that does not mean it is NOT effective, it only means that the data is not there yet.

Taxm replied, that he is on 5mg and it has been effective.

Sometimes, the literature lags behind clinical data simply because it has not been reported or written about.

Have hope and know, that it could possibly work.

Afterall, they were using 40mg of dexamethasone, and then because patients couldn't tolerate it they dropped it to 20mg, without literature showing it was effective. It was. Low dose is now standard, and that was due to oncologists using it before there was data to support it. And now clinicians use even lower doses, like 5 and 10mg and they too are effective.

So while your clinician is right, in terms of what has been shown by clinical trials..there is every possibility that a low dose is effective, they simply have not done those trials.

wishing you well

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: Revlimid maintenance dose

by jodiw on Mon Oct 01, 2012 9:19 pm

Thank you all for your responses. I guess there really is no consensus at to what the ideal dose of Rev is among the docs. My first bone marrow bx done 3 months post SCT showed
1-2% kappa restricted plasma cells and I had a faint IgA band on immunofixation. It was then that I started the 5mg of Rev as maintenance.

Another bone marrow bx done 3 months later showed "no evidence of residual multiple myeloma" and "no monoclonal bands on immunofixation." It was then that the Rev was increased to 10mg daily and my platelets crashed soon after. The Rev was stopped.

Approximately 4 months later, and off Rev the entire time, a subsequent bone marrow bx again showed 1-2% kappa restricted plasma cells and my onc thought I was beginning to relapse. Rev 5mg was restarted.

Yet another bone marrow bx 3 months after the restart (can you tell my onc just loves to order these?) showed "no evidence of residual disease." Immunofixation remained negative for any monoclonal band. Again, Rev raised to 10mg daily (what the onc feels is an ideal dose) and my platelets took a nosedive down to the 30's about 3 weeks after. Again, Rev stopped for approximately 10 weeks while the platelets slowly recovered. I just restarted about about 3 weeks ago at 5mg daily

By looking at this pattern, I think that 5mg of Rev was indeed effective for me in keeping a relapse at bay. It seems that only when the dose is raised to 10mg I have a substantial platelet reaction. At any rate, I am having another bone marrow bx done this week. I have only been back on Rev 5mg for about 3 weeks and my platelets are holding at about 124 which is great for me. I'm hoping to have another clear bx and convince my doc to stop playing with the dose. Aside from the platelet issue, the only side effect I get from the Rev is fatigue. Hope I haven't confued everyone.

jodiw

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