Ocular Melanoma Metastatic to the Liver

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This is a post from the UCU-MEL list. It describes one 13 year-old patient's experience with Thalidomide. (Used with permission.)
Date: Thu, 22 Nov 2001 03:56:37 -0500
From: lettie43 Email: lettie43@HOME.COM
Subject: thalidomide

Hi Martina,
Tali has been on thalidomide since about November of 1998. She started with fifty mg a day and built up to 500 mg a day (ten pills- 50 mgs each). It gave her a very good appetite, aside from it's other side effects. She was incredibly sleepy from it at first, but eventually was able to tolerate more and more with less sleepiness. We spread the dose out over the day instead of taking the whole dose at night all at once, as is sometimes suggested. We like to feel that this way she is getting coverage throughout the day. She gets her last two pills at 10:30 pm. We think that the thalidomide has helped to slow down the growth of Tali's lesions. Some of the stuff in her liver hasn't changed in a very long time and her doctor thinks that it may be dying. It seemed to us that the thalidomide didn't start affecting the tumor's size while it was very tiny, but after the tumor got to a bigger size (and required a larger blood supply?) the thalidomide seemed to kick in and stop it from growing larger.
Aside from the sleepiness and increased appetite, Tali got headaches in the beginning with the thalidomide, so we gave her Advil in the morning with her first dose, and Tylenol during the day if she needed it. The headaches seemed to go away after she got used to the drug. Thalidomide causes constipation, so Tali takes 50 mg of Colace twice a day to keep her bowels moving. In addition, we give her acidophilus and bifidus capsules. When she takes them, we find that the constipation is les of a problem. Tali also gets tingling or a vibrating feeling in her hands and feet. This symptom can be permanent and is mentioned in the protocol as a reason to stop the treatment if it doesn't seem to be going away. The tingling is Tali's biggest complaint right now with the drug. I think it's here to stay. We are afraid to even consider taking her off the thalidomide though, since the disease could spread very fast if there is nothing to hold it in check. Also, there may be a possibility that stopping the thalidomide could cause some kind of a backlash reaction making the tumors grow out of control if she stops taking it.
We used to get the drug from a doctor in Tennessee who gave it to us as part of a study Tali was in with him. When his study ended, so did our free supply of thalidomide. You don't want to have to pay for this stuff. It's ten dollars a pill. Our insurance will only cover a small part of the bill. We were able to work out something with Celgene who makes the drug. They have a program where they will provide the drug if you can meet their requirements and show need.
Good luck to you both. It's wonderful that Roger bounced back despite the doctor's gloomy advice. I hope your holiday is peaceful and hopeful. Take care,

Arlette (Tali's mom)

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