[bmmiller]

Revlimid maintenance and its side effects

by bmmiller on Sat Jun 29, 2013 5:11 pm

Hello all,

I was diagnosed in August 2011, Velcade/Dex/Cytoxan rounds, ASCT in March 2012. I've been on a very small (5mg) dosage of Revlimid as maintenance since July 2012. Very luckily, I did quite well on initial therapies, and recovered nicely from ASCT.

But the Revlimid?! Yikes! I've had near constant respiratory infections, pink eye, vertigo, con­sti­pa­tion and diarrhea since I started. My blood counts are good, but immune factors are low (due to Revlimid, most likely).

I've been very aggressive with treatment all the way through (added a week of VDT-PACE prior to transplant, extra two weeks of initial therapy, etc.) as I was diagnosed pretty young 47) and figured I'd throw everything I could at it while I was relatively healthy ( . I'm pretty disap­pointed that "maintenance" is giving me such a hard time, as I'd planned on at least 2 years of Rev­li­mid. I've already had to lower dosage from 10mg to 5mg and now I'm seriously con­sider­ing dropping it all together because of the side-effects (which keep me from working also).

Anyone had similar experiences? Ideas? Anyone go from Revlimid to Velcade maintenance? I still have my port, so no biggie to go the infusion route.

Thanks in advance for advice/comments! Hope you are enjoying a beautiful summer!

[azalea3419]

Re: Revlimid maintenance and its side effects

by azalea3419 on Sat Jun 29, 2013 5:42 pm

I was diagnosed two years ago at age 62-had Velcade and dex-went on Revlimid for about
a month (25 mgs.); had stem cell transplant in February 2012 and went back on Revlimid (10mg) in June 2012. After a year I'm really getting tired of the side effects; they seem to get worse by the third week of each treatment; I guess there is no alternative but sometimes I do just feel like stopping it altogether; tired of the diarrhea, headaches, dizziness, back pain.

[dnalex]

Re: Revlimid maintenance and its side effects

by dnalex on Sun Jun 30, 2013 12:43 am

My mom had her autologous stem cell transplant (ASCT) in December of 2010, and began maintenance therapy in February of 2011. Initially, the maintenance regimen consisted of Velcade, Revlimid, and dexamethasone (VRD). The dex dosage was decreased shortly thereafter and then eliminated altogether.

My mom was on Velcade and Revlimid for about 14 months, and then all of the sudden the side effects got really bad in the last month, so she elected to stop maintenance therapy, after consulting with her myeloma doctor. That was in October of 2012.

She now goes for check ups with her myeloma specialist every 6 months, and see her local oncologist (also a myeloma specialist) every six weeks. She was on Zometa, but that too had been stopped. We are praying and crossing our fingers that no other treatments will ever be needed.

[rumnting]

Re: Revlimid maintenance and its side effects

by rumnting on Sun Jun 30, 2013 1:56 pm

I don't have an answer for you, but I do have a question. Why do you still have your port?
If you do begin Velcade, there are far fewer neuropathy side effects when it is given subcutaneously (like an insulin injection) rather than by IV.

[bmmiller]

Re: Revlimid maintenance and its side effects

by bmmiller on Sun Jun 30, 2013 2:24 pm

Hello rumnting ... I have really lousy veins. Kept my port because I get Zometa monthly.

[anonymous_2]

Re: Revlimid maintenance and its side effects

by anonymous_2 on Mon Jul 01, 2013 10:25 am

I was diagnosed in December 2010, started treatment in April 2011 - radiation, Velcade / dexamethasone / Revlimid rounds, then an auto stem cell transplant in October 2011. Have been on maintenance Revlimid (10 mg) since May 2012.

I, too, was having difficulties with side effects, so my oncologist gave me a 5 week chemo holiday in April and started me back on Revlimid (10 mg) in May. Even though the Revlimid is the same dosage, my doctor changed my cycle of when I take it. I used to be on for 21 days / off for 7 days. I am currently on for 14 days / off for 14 days.

I still have side effects, but not nearly as bad as I was having. The GI issues aren't as bad. I still have the fatigue and muscle cramps, but I'm dealing with them. I'm also still working, although a shortened work day. The muscle cramps are the worst. I do find that drinking plenty of tonic water, because of the quinine, really helps. I, too, kept my port, as I receive Zometa infusions every three months. I felt dealing with the maintenance for the port far outweighs having to get poked repeatedly, while the nurses try to find good veins to use when needed. When my treatments end, I may consider getting rid of the port, but not until then.

When I was getting Velcade infusions, the side effects from that were far worse than what I had with the Revlimid. The Velcade caused permanent neuropathy. I know that some patients have gone to subcutaneous injections and weren't having as many issues with the neuropathy, but when I discussed maintenance therapy with my doctor, I told him I did not want to have to go back on Velcade. I trust my doctor to know what treatment is best for me and we discuss it.

I've been in remission since January of this year and I keep my fingers crossed that it continues for a long time.

Good luck with finding the best treatment for you.

[Dr. Jason Valent]

Re: Revlimid maintenance and its side effects

by Dr. Jason Valent on Tue Jul 02, 2013 12:04 pm

Some of the infectious complications and low immunoglobulin levels may be a result of the transplant itself but the Revlimid may be contributing. The diarrhea is a relatively common side effect from the Revlimid though.

If the immunoglobulin levels are low (IgG below 500 with recurrent infections is my not so hard and fast rule) I use supplemental IVIG to try and minimize the risk of infections. There is some debate as to the utility of the IVIG but given your symptoms, this would be something to discuss with your physician.

If the Revlimid proves to be intolerable, it is very reasonable to use maintenance doses of Velcade every other week and I have been using subcutaneous dosing to try and minimize the risk of neuropathy developing. I have had patients on this regimen for several years and it seems to be well tolerated (although fatigue seems to be cumulative).

[Eric Hofacket]

Re: Revlimid Maintenance and its side effects

by Eric Hofacket on Wed Jul 03, 2013 1:50 am

My experience with 10 mg maintenance Revlimid after my stem cell transplant has been really good. I started it sometime around March of 2012.

There have been some problems though. My CBC counts have been on the low side and I seem to get sick relatively easy and take longer to recover. Because of this, there have been a few times when I stopped Revlimid while waiting to recover from illness. I tried flying for travel, but it seemed every time I went into an airport I got sick, so I avoid airports as much as I can. Once when my platelets were low, my big toes developed subungual hematoma (bleeding under the nail) and the nails grew distorted for a period of time. But I first noticed this after I had taken off my ski boots last winter. If I can ski, I must be tolerating Revlimid maintenance petty well.

I have been swimming about 10,000 yards a week, cycling 30 to 70 miles on weekends, and hiking at some pretty high altitudes this last month. My stools have been perfect. I have been doing a lot better than most and if Revlimid can double my progression free survival time and possibly extend overall survival time, it is well worth it for me.

Velcade for my initial treatment hit me pretty hard and I had to stop treatment, but it did work well on my myeloma. Like Pat discussed in his column today, I would have to think really hard about the risk and rewards before ever starting Velcade again. It is kind of strange how these drugs can be tolerated so differently in people.

[sandyramdass]

Re: Revlimid maintenance and its side effects

by sandyramdass on Wed Nov 06, 2013 8:27 am

Hi,

My mom is on 5 mg Revlimid and the side effects are still horrible.

There hasn't been any weird blood result, but to suppress the M protein she needs to stay on the pill. Hasn't been taking them regularly because it really disrupts her routine.

Any tips or advice?

OR what else she can take?

Thanks,
Sandy

[rumnting]

Re: Revlimid maintenance and its side effects

by rumnting on Wed Nov 06, 2013 6:53 pm

I'm not sure what specific side effects are bothering you mom, but maybe this will be helpful. When my husband was put back on Revlimid 5 mg, he became pretty fatigued. If he sat down on the sofa, he was asleep within minutes. That only lasted a few weeks. He now says he doesn't notice any side effects at all. Perhaps she needs to take it consistently for awhile to see if they lessen.