[Fiona]

Re: Side effects of Revlimid as Maintenance Drug

by Fiona on Wed Dec 11, 2013 7:19 am

There are a lot of helpful suggestions about how to deal with cramps in this thread here in the forum: https://myelomabeacon.org/forum/muscle-cramps-t930.html . Some of the suggestions are from the forums physician experts. In my own personal experience, a number of the suggestions actually work very well.

[coachhoke]

Re: Side effects of Revlimid as Maintenance Drug

by coachhoke on Wed Dec 11, 2013 12:35 pm

I take 5mg of Revlimid daily (no breaks) and it seems to be keeping my multiple myeloma at bay (M-spike 0.2)
Only side effect is fatigue. Anybody else on that low of a dose?

Thanks,
Coach Hoke

[Kaew]

Re: Side effects of Revlimid as Maintenance Drug

by Kaew on Sat Jan 11, 2014 10:30 am

Hi coachhoke

I'm on 5 mg as a maintenance after transplant on 11/12, start of with 10 mg everyday but my ANC and platelets dropped so low real fast, now I'm on 5 mg , 3 weeks on 1 week off. Hopefully this will help keep my count up.

[Kaew]

Re: Side effects of Revlimid as Maintenance Drug

by Kaew on Sat Jan 11, 2014 9:36 pm

Yesterday my platelets dropped to 37. I'm only on 5 mg as a maintenance. This is my 2nd time on Revlimid. First time was 25mg, then stem cell transplant. Struggle to keep my ANC and platelets up the last 6 months.

Kaew

[Terrilynnn]

Re: Side effects of Revlimid as Maintenance Drug

by Terrilynnn on Sat Jan 18, 2014 11:00 pm

Hard to nail down what side effects to what drugs. My guy is on 25 mg Revlimid daily and Velcade 2 times a week. Tues and Fridays. He is experiencing - extreme fatigue, nausea, lack of appetite, arm and hand spasms, fevers on Friday nights to 39.5 dropping to 36.3 within 12 hours, chills , Chemo brain, diareaha, and sometimes just kinda spacey. He does get mouth sores from Velcade and uses the mouthwash. Our cost for Revlimid is just under 6000 for 14 pills.

[Ray in CT]

Re: Side effects of Revlimid as Maintenance Drug

by Ray in CT on Sun Jan 19, 2014 10:43 am

I was diagnosed at age 63 and had a lot of success with Revlimid but adverse reaction to Velcade (extreme weight loss. I've since undergone the transplant with my own stem cells and am happy to say that quarterly test show no detectable levels of the items they look for in the bloodwork.

I have been on a 10mg dose of Revlimid for maintenance and have found diarrhea and mild neuropathy in my extremities and stomach nervous systems. I will be getting off this treatment in 6 months.

[Warcun]

Re: Side effects of Revlimid as Maintenance Drug

by Warcun on Mon Mar 31, 2014 12:23 am

Ray, why are you going to be getting off of your Revlimid regimen?

My wife had the stem cell transplant after Velcade therapy did not work. After starting Revlimid, her levels also went to an undetectable level, but her oncologists has said she will stay on the Revlimid until it fails to work.

[Wayne K]

Re: Side effects of Revlimid as maintenance drug

by Wayne K on Mon Mar 31, 2014 2:41 pm

Warcum I believe you are just seeing the unpredictability of multiple myeloma. Velcade put me in remission and off of dialysis, due to light chains, in 4 months with very few side effects. I then did a stem cell transplant and was in remission for 3 1/2 years without any maintenance. I'm relapsing slowly now and will start Revlimid for the first time.

It seems most people on here have a different experience and there is no norm.

[Wayne K]

Re: Side effects of Revlimid as maintenance drug

by Wayne K on Thu Apr 17, 2014 6:17 pm

Well, I've been on Revlimid for 16 days now, and the side effects are kicking me hard. I say they are due to Revlimid, but I also had a Zometa treatment at day 7.

I'm having trouble functioning due to extreme fatigue, but it has also worsened after I recovered from the first Zometa side effects. I'm having some neuropathy and constipation, but nothing I can't handle.

Anyone seen a connection between the two drugs, or is it the effects of one?

[Ellie age 75]

Re: Side effects of Revlimid as maintenance drug

by Ellie age 75 on Thu May 29, 2014 11:10 am

I was on Revlimid for about six years, most of that time I was on 5mg daily, no break.

In July 2012, I was diagnosed with acute myeloid leukemia (AML). I spent about 8 weeks in the hospital and was at a rehab facility for about 10 days. While in the hospital, I had a defibrillator-pacemaker inserted because of a long QT.

I am now in remission from the leukemia and currently have no measurable m-protein. I am now on decitabine [Dacogen] (3 shots over two weeks). Thus far I have relapsed.

Opinion has it that the leukemia is probably a side effect of the Revlimid I took.

Forgot to mention I was 64 at time of diagnosis.