Question of others using Thalidomide
 

I've had a great response to Thalidomide. It seems that many doctors don't try it. I recently noticed that UCLA has a study going using Thalidomide for MDS.

Have any others on this site had good results?

If it stopped working, what did you try next?

Just trying to get info and see if the forum will generate some usage.

Wow, congratulations on the great response. You give me hope!
I think the new drug Revlimid is a form of thalidomide, and is a great hope for MDS. I think I am spelling it right...:p
keep up the good work!
Jennie

Hi Jenny,

Glad the info encouraged you. Don't ever give up and keep up a positive attitude. You have to be your own advocate with MDS.

Have you had a bone marrow biopsy? Hopefully you can start on a drug that will help your MDS. A doctor that has experience with MDS is very important.

Kirby

Vidaza and Thalidomide
 

Kirby and Other Interested Parties:

Good to see your post about Thalidomide. Currently, I am in my 5th 28 day cycle of Vidaza and Thalidomide. I'll be posting detailed information about my case and results next week prior to starting my 6th cycle. At that time, I'll have current counts, etc.

Larry Gard

Thalidomide didn't work for me. It did give me neuropathy in the toes of both my feet.
John MDS-RCMD now 46, dxed at 42.