Experience of Pomalidomide?

Dear, by a strange coincidence i had a conversation with my doctor about Pomalidomide last Tuesday as it is the next drug in line after Lenalidomide which I’m currently taking, as they are both derivatives of thalidomide the differences are quite subtle but I have seen research that indicates good response rates for relapsed myeloma, in your case it would be whether you suffered less side effects than being on Lenalidomide. I know thalidomide is considered to have more risks around toxicity than Lenalidomide. As usual it’s very much a suck and see approach taken by the doctors with these things. Out of interest how do feel on your dex days and what sort of dose were you taking with the Lenalidomide.

Dear Johnty

I was on the full strength lenalidomide (25 gms) plus Dex 3 out of 4 weeks, but the consultant reduced those to 15 mg and Dex just once a week.  I have to have the Dex staggered when I come off it, as otherwise my blood pressure plummets and I have passed out a couple of times (bit scary)!

The consultant is going to put me on the max pomalidomide (4 gms) so we'll see what happens.

Val 

Very interested in your post, as I am in almost exactly the same situation.  I was firstly on Velcade for a year, but that failed to work, then switched to Lenalidomide, but latterly developed the same effects (exhaustion, loss of appetite etc.)  Following an increase in anaemia, a CT scan showed an aggressive myeloma mass in my pelvis. I then had a 2 pint blood transfusion which then gave a considerable improvement in my general feeling of well-being (?!) 

I'm to start on Pomalidomide, plus Cyclophosphamide next week.  The doc. has given me a four-day course of Dexamethasone as a boost to keep my going 'til then.

Good Luck with your course, Val - let's see how mine goes!

Here's hoping for us both - Jake

Dear Jake,

just wanted to wish you all the best with your new regime, I did a couple of courses of darzalex which had no effect, then went onto revlimid and got an instant response, so it seems it’s a very individual thing what works for the patient. Hang on in there and don’t be afraid to ask about your steroid dosage if you find it hard going as it can be tweaked a bit.

Thanks for your encouraging comments Johnty.

I am keeping a very positive attitude which is the only way to go, and have every confidence in the excellent treatment given to me by the superb staff at Inverclyde Royal Hospital.

Thanks again,

Jake

Val. How did you get on with the pomaludomide? Were the side effects easier to cope with?

Fishing Jake - how did you get on? My consultant wants me to start the same regime. How were the side effects? GI issues, hair loss?

Hi

This is Chris, Val's husband.  I'm sorry to have to tell you that my brave darling wife died earlier this year from complications associated with Myeloma.  I think she found Pom easier to tolerate than Lenolidomide but it had nothing like the dramatic effect that Velcade had on the cancer in the lead up to her year of remission.  Sorry I can't be of more help

Kind regards

Chris L