[Golf addict]

Re: Side effects of Revlimid as maintenance drug

by Golf addict on Wed Oct 22, 2014 3:14 pm

I have taken Revlimid as a maintenance routine (10 mg, 21/7) since July, with dex (20 mg) weekly, and have had trouble with some of the side effects, mostly neuropathy in my feet, and leg / ankle / foot cramping overnight (ankle cramps are the weirdest thing).

The doc recommended a cut back of Revlimid to 5 mg and will watch my kappa numbers. Since the Velcade routine ended, light chain numbers have been in the normal range, so we'll keep an eye on them.

I DO remember more of my dreams now, where before treatments I was never able to remember any except the 'I have a final exam tomorrow and I haven't been to class all term' ones .

We will see how the reduction in Revlimid works on my neuropathy & leg cramping.

[darnold]

Re: Side effects of Revlimid as maintenance drug

by darnold on Sun Oct 26, 2014 12:59 pm

Hi Rob. I took Revlimid as a maintenance drug (10 mg) without dex. I couldn't handle it from a blood count perspective, but I never had neuropathy issues. My oncologist finally took me off of it, and I went a year without any maintenance drug before my lambda levels started to shoot up again. I hope the lower dosage works for you.

Dana A

[dianaiad]

Re: Side effects of Revlimid as maintenance drug

by dianaiad on Sun Oct 26, 2014 1:18 pm

I am currently taking 10 mg of Revlimid (no dex), and have been for eight months now. The side effects have been, for me, mild and a bit weird, though fatigue and insomnia can be annoying. I get around those by taking Revlimid in the mornings, scheduling all my 'energy taking' stuff before 2PM or so, and spending the rest of the day doing quiet stuff (after a nap). So far it's working out OK.

I had a low grade fever during all of one cycle...well, low grade for me: temp got all the way up to 100. Since my normal temp is around 97.3 or so, that's a bit like 101 for 'normal' people. One cycle gave me hives, but I'm handling that with Claritin (which I have to take anyway for hayfever ... no biggie).

I haven't had any neuropathy, and the peripheral neuropathy I had to deal with last summer as a result of the Velcade has resolved, leaving me with a small tremor in my left hand. My WBC goes down, of course, but the week off allows it to go back up to acceptable levels.

None of these side effects are too miserable to deal with, none have required extra medication or (so far) time off. So far the only REAL problems I've had with this drug have been financial and bureaucratic.

I feel, upon reading what others here have been dealing with, extremely lucky indeed.

[Sad]

Re: Side effects of Revlimid as maintenance drug

by Sad on Tue Nov 04, 2014 2:48 am

My dad was diagnosed in April after severe symptom of high calcium in the blood. His renal function had been holding a creatinine of 3.5 for years. But they started him on Revlimid.

After 5 days, he was not feeling well enough to drink. All they recommended was water and his doctor did not have a back up order for IV. He became very dehydrated and thrown into renal failure, ended up on a ventilator and dialysis!

The impressive result is the myeloma response was that of someone who had completed at least 1 full cycle! The bad news is he was able to come off the ventilator but was never able to stand or sit up on his own. Dialysis was horrible, and he just never could make it home from a rehab home. He passed away.

He was on 25 mg of Revlimid. If he was already a dialysis patient, they would have placed him on 10-15 mg with probably a decent response.

This stuff is poison and just because it's a chemo pill. It should not be taken lightly. The Revlimid killed him, due to misprescribed by oncologist especially to an older man who had no other medical issues before the myeloma diagnosis.

Just be careful when taking it. Start at low doses! It could have given my daddy a few more months of quality at home! Instead of never getting home after 2 months of being diagnosed and dying in a rehab hospital.

Just sad!

[NancySchif]

Re: Side effects of Revlimid as maintenance drug

by NancySchif on Fri Nov 14, 2014 9:07 am

As for the cost of Revlimid, my oncologists pharmacy set me up with the discount program offered directly from Celgene. From the very start, I have paid $25 US for every prescription fill.

[coachhoke]

Re: Side effects of Revlimid as maintenance drug

by coachhoke on Sun Nov 16, 2014 4:20 pm

I stopped taking maintenance Revlimid nine weeks ago after taking it for the previous year and a half. I still have a constant horrible taste and frequent episodes of diarrhea. I'm wondering if the Revlimid did permanent damage to my taste buds and to my GI tract (like Velcade can cause permanent peripheral neuropathy)?

Any thoughts?

Thanks,
Coach Hoke

[antelope1225]

Re: Side effects of Revlimid as maintenance drug

by antelope1225 on Sat Nov 22, 2014 4:18 pm

I know everyone wishes they didn't need to take Revlimid, but I thought I would attach a video of a TED talk that basically describes HOW Revlimid works. It works by anti angiogenesis. That means that Revlimid inhibits the blood vessel proliferation in our bone marrow.

http://www.ted.com/talks/william_li

K Dredge et al, "Orally administered lenalidomide (CC-5013) is anti-angiogenic in vivo and inhibits endothelial cell migration and Akt phosphorylation in vitro," Microvascular Research, January 2005 (abstract).

Revlimid is a critical tool in our arsenal.

I also know that it inhibits my bone marrow from producing white blood cells, so I can get sick more. So it is a fine balance, but I will probably increase my Revlimid next doctors appointment

Cathy

[Wayne K]

Re: Side effects of Revlimid as maintenance drug

by Wayne K on Mon Nov 24, 2014 11:16 am

My problems revolve mainly around loss of appetite and nausea on a daily basis. My white cells and platelets tanked after 4 months, and I was off of it for a month. I went back on and finished 16 days last month and my white cells and platelets immediately tanked again. If that wasn't enough, my protein and M spiked.

I'm not sure where I'm headed now, but the Revlimid seems to have stopped having any positive effect. My next appointment is in mid December, and I hope the oncologist has some ideas. I'm wondering if Velcade again is a good option because I had a very quick response the first time I took it.

[DallasGG]

Re: Side effects of Revlimid as maintenance drug

by DallasGG on Sun Nov 30, 2014 9:37 pm

I'm currently on 10 mg / day, 28 out of 28 days, for maintenance. I take Revlimid about 1-2 hours before bedtime. One side effect I have that I haven't heard anyone else mention is that at night I experience frequent urination – about 4-5 times per night – which doesn't make for a very restful sleep most nights. I don't have that same problem of frequent urination during the day though. Has anyone else experienced frequent urination while on Revlimid?

I am switching to taking Revlimid 21 out of 28 days and next week will be my off week. So I will be able to tell if the frequent urination is actually caused by the Revlimid or not.

[mikeb]

Re: Side effects of Revlimid as maintenance drug

by mikeb on Tue Dec 02, 2014 12:01 pm

Hi DallasGG,

I'm on the same Revlimid maintenance dosage and schedule that you've been on. I don't have the frequent night time urination problem that you mentioned. I used to get up 3 or 4 times a night before I started my treatment, but now only 1 or 2. One hypothesis that I have about this is that I wake up less often because my back feels lots better than it did before I started treatment.

I'll be interested to hear how your off week goes. Good luck!