Thalidomide (Thalomid)

Hello out there. Is anyone taking Thalomid (thalidomide) for multiple myeloma? I have been on it since Aug 2002. 50 mg qd for 3 months then reduced to 50mg qd and now back up to 50 mg qd. I just turned 50 and was diagnosed in Oct 2001. 10 months of chemo didn't work so I was unable to have transplant. I also have Multiple Sclerosis, which was in remission until I started taking the Thalomid. I have gained 50 pounds since I started Thalomid. I stopped gaining when the dose was reduced to every other day. Now that I am taking it every day I am starting to gain more weight again. I know that weight should be the least of my worries but I am finding it hard to do normal stuff due to the increase in weight gain. Is anyone else having the same problem? My only alternative is Revimid but I can't get it until the Thalomid stops working. The worst of two evils. The Thalomid is keeping me alive but it is also causing me to be fat and crippled. I am laughing as I write this. Got to keep a good sense of humor with this. So please, I hope know one is offended. I do try to swim daily and watch what I eat but it doesn't seem to make a difference. The pain from the peripheral neuropathy is terrible. I have started taking neurontin, which has helped a great deal. I would welcome any input.

Have you talked to your Dr. about Velcade?

My husband has been on Thalidomid for over two years. It made him sleepy the first few months. The main thing that it can cause is constipation. He ended up in hospital with it. Now, they changed his meds. to deal with that. He has had good results with it. My husband was obese before he started on the treatment. If he would of worked with the doctors and lost weight he would of been able to look into more types of treatments. He takes 200mg dose.
Colleen