[Terrij]

Pomalyst side effects

by Terrij on Thu Jan 29, 2015 12:19 am

Has anyone had experience with Pomylast (pomalidomide, Imnovid)? What side effects did you experience?

[Tracy J]

Re: Pomalyst side effects

by Tracy J on Thu Jan 29, 2015 6:26 am

My Dad took Pomalyst on a clinical trial for AL amyloidosis through Boston Medical Center for six months.

He had a lot of fatigue, suppressed immune system with a bout of shingles and recurrent gout, and intermittent itchy rash that never turned into anything more serious. It did bump his creatinine (measure of kidney function) for the worse a little bit, but not horrible. He never had dangerously low blood counts, and he remained ambulatory and functional.

Pomalyst put him into complete response, when nothing else had -- including an autologous stem cell transplant and 8 months of Velcade and dex.

[dfhenry]

Re: Pomalyst side effects

by dfhenry on Fri Jan 30, 2015 7:34 pm

Background: 67 year old white male diagnosed with multiple myeloma in 2009. Have undergone two stem cell transplants (2011, 2013), have not had good response to previous treatments

I have been taking Pomalyst + dex for the last 15 months. It was a last resort; my second stem cell transplant had not been effective, and my M-spike was starting to go back up. Chromosomal analysis had previously indicated a 17p deletion and 1q duplications, which I believe are a more difficult form to treat.

I began receiving Pomalyst + dex in September 2013. My M-spike in October was 0.65 g/dL (6.5 g/L), the highest it had been since the transplant in May. By November, it had dropped to 0.20, and was 0.13 in December. By March, they could not measure any monoclonal protein and all blood tests since have been M-Spike free.

So I've had an excellent response. I am currently on a two week on, one week off cycle. I work out regularly, try to eat healthy food with as much fiber as possible, and get plenty of rest.

Three notable side effects include:

1. Constipation, which I've been able to deal with successfully by taking about 1800 mg of fiber daily in addition to a fairly high-fiber diet.
2. I cough regularly, have had pneumonia once, and it takes quite awhile to recover from colds.
3. Blood counts have remained in the low-normal to low range, but I've really stayed pretty healthy.

All in all, I feel my response to the Pomalyst + dex has been pretty good.

Hope this helps. Good Luck!

[Chaseddy]

Re: Pomalyst side effects

by Chaseddy on Fri Jan 30, 2015 10:21 pm

I did not experience side effects I would consider significant from the pomalidomide + dexa­metha­sone regimen. I was on the pomalidomide trial at Boston Medical Center for amyloidosis for 12 months, ending 2 months ago. I'm 73 years old and live in Los Angeles, which meant traveling to Boston monthly for the first 3 months and then quarterly thereafter, which did not pose a problem. I also took one overseas trip during this time and maintained a regular routine of work and exercise.

• My red cell and hemoglobin count were somewhat low, but this has been the case most of the time since I started previous treatment regimens 5 years ago, including an autologous stem cell transplant.
• Some increase in blood pressure, which was controllable.
• Modest increase in creatinine, but this may be due to the amyloidosis
• Effects which I consider minor included dry mouth, some weight loss toward the end of the period, and lower back soreness (which may or may not be due to the Pom + dex).

Best with your treatment.

[Big Bill]

Re: Pomalyst side effects

by Big Bill on Sat Jan 31, 2015 2:32 am

I have been on Pomalyst now for 6 months and 40 mg of dex, and the only side effect I get from the Pomalyst is being tired. My platelets were low and are recovering. I have no high blood pressure, my kidney and liver functions are fine, and my diabetes is under control -- A1C is 6.6, though the dex does raise my sugar levels for three days.

I consider the dex with more side effects than the Pomalyst. I started with 4 mg and, after one month, was lower for the platelet reason. My labs showed an increase, but now have been stable and reducing slightly each month. Hope this continues.

[madison]

Re: Pomalyst side effects

by madison on Sun Feb 01, 2015 10:59 pm

They gave it to me. Had terrible side effects, put me in hospital with severe gastritis. Fact, you take it on empty stomach. I had nausea, weight loss. But I'm not an average person. I got stomach cancer two years ago. Only got one quarter of stomach. But I couldn't take it. I'll never take chemo any kind on empty stomach again.

[JonEman]

Re: Pomalyst side effects

by JonEman on Mon Feb 02, 2015 3:27 pm

I have had Pomalyst with Kyprolis (carfilzomib) and dex. The biggest issue was shortness of breath. However, I believe that side effect was mainly from Kyprolis. I have had Pomalyst without dex added and developed a full-body rash. I am now using Pomalyst with low-dose dex with no rash issue.

So the only side effects are the usual; low grade fevers, headaches, mild flu-like symptoms, con­sti­pa­tion, the normal chemo side effects.