[silverberg]

Pomalyst - time to response?

by silverberg on Tue Jan 14, 2014 5:15 pm

We have just begun Pomalyst-Velcade-Dex after becoming resistant to Velcade and thalidomide.

We are curious how long the response to treatment time is, that is, how long did you use Pomalyst before you began to see a positive response?

Thanks,

David and Marianne

[davidincalif]

Re: Pomalyst - time to response?

by davidincalif on Wed Jan 21, 2015 5:01 pm

My reply is a year late, but yours seems to be the last message on this topic. I hope this helps.

I have been taking Pomalyst (2 mg) and dexamethasone for exactly one year. My M-protein ("M-spike") level went from 0.9 g/dL (9 g/L) on Velcade to 0.4 g/dL on Pomalyst and dex. It has held steady for 12 weeks, but my oncologist wants me to continue until it is 0.0 before taking me off the drugs. I was started on 4 mg of Pomalyst, but seem to be having too many days where I did not feel well, so the dose was reduced to 2 mg; we weren't sure that that would resolve the problem, but it apparently did.

So I would say that I have had a fairly good response to these drugs, except that I am dealing with morning dizziness several days of the week. I take other drugs, most of which cause dizziness, of course, so it is difficult to pin the problem on Pomalyst / dex, although it is a side effect of Pomalyst.

I have been taking Pomalyst before I go to bed. I take the full dose of dexamethasone (40 mg) every Wednesday morning, including the Wednesday of the week when I'm not taking Pomalyst. The next day, I think it is the dex that causes me either to sleep for several hours, or feel like I have the energy to paint the Sistine Chapel in the Vatican. I have been awake for 36 hours on occasion.

I have asked the pharmacist if she is sure I'm supposed to take the entire 40 mg of dex at one time, and she has repeatedly said yes. So I have learned to live with this aberration, but I'm still trying to figure out whether there is a way to eliminate the dizziness. It may be that I am stuck with it until the Pomalyst is no longer needed.

By the way, medicinal marijuana does help to alleviate and often eliminate the morning dizzi­ness, but I have to be careful not to replace dizziness with being stoned. I am ex­peri­ment­ing with vaporizer oils, but don't yet have enough information to report results.

Keep an ear open for more on the study reported at the December 2014 American Society of Hematology in San Francisco and the December 6 issue of the New England Journal of Medicine on December 6. In the study, 792 patients with relapsed multiple myeloma found an "unprecedented" prolongation of time that patients were free of disease progression when they were given three drugs – Kyprolis, Pomalyst and dexamethasone. All of these drugs have been approved by the FDA, so I imagine that there will be a few more clinical trials before this is considered a preferred approach by oncologists.

If anyone has ideas for reducing dizziness while using Pomalyst / dex, please post.

Thanks,
Cloverdavid