Thalidomide

[andrew]

hello there

Wondered if anyone can help – my mom has been on thalidomide 50mgs for the past three months – she is thriving, is pink as anything and is full of energy. This is all the more suprising given that before taking thalidomide she was weak, needing txs every 3 to 4 weeks and always nursing a cold etc. How long can I expect this to last? Also she is not experiencing an profound side effects to the drug. Her last tx was nearly 2.5 months ago.

[Carl]

I started on Thalidomide at 100mg a day in and the Hemo increased it after a month to 200 mg a day. I showed improvement almost from the start and after a month and a half my HBG did not go below 12.0. My Hemo said that I could take the Thalidomide as long as I could tolerate it and it was still doing some good. The side effects I experienced were sleepiness (no problem since I took it before bed), constipation, dry skin and numbness in my exteremities. He indicated that a few people can take it as long as 1.5 years, but due to the numbness (neuropathy) in my feet and fingers I finally stopped the Thalidomide in December ’04. I resumed 50 mg of Thalidomide in February due to my RBC counts getting so low that I had to have a transfusion.

I’m glad the Thalidomide works for your Mother and the neuropathy does not present a problem for her.

[andrew]

Thank you Carl – I don’t supppose your doctor has told you when he anticpates revlimid will be approved by the FDA?

[Carl]

Having been (impatiently) waiting for Celegene to get the trial drug Revlimid approved, I called their Medical Affairs Division in February to see what the progress was and when they expected the drug to be approved for public use. They told me that initial approval information went to the FDA the last quarter of 2004 and they are scheduled to send some additional information the end of March 2005. The person I spoke with said they had no idea when the drug would be approved by the FDA and available for public use.
I checked the FDA web site and they have designated orphan drug status to Revimid (aka Revilimid, or Lenalildomide)on January 29, 2004. There is no information from the FDA on approval of the drug.
Celegene said they do not dispense the drug under a compassionate basis and the only way to get it now is through a clinical trial, which are all closed at the moment. They said to check the web site for clinical trials (http://www.clinicaltrials.gov) for “CC-5033” to see if any new trials come open.

[Kathryn]

Hi, my father was on 400mg, but started chemo on Monday. It wasn’t working as well as needed. The doctor also wants him to try an experimental drug that is to possibly become available in May.

I was wondering if there are any side effect of coming off of the Thalidomide like sleeplessness. My father has hardly slept since Monday. On Monday he didn’t sleep at all and on Tuesday only a couple of hours.

I am wishing you both the best, for you and your mother, Andrew & for you, Carl.

Take care,

Kathryn

[andrew]

Thank you everyone for your responses – it really helps talking to people online.

[Carl]

Kathryn,

Yes, when I stopped the 200 mg dose of Thalidomide in December I experienced a problem going and staying alseep. I discussed it with my Dr. and he prescribed something to help me sleep on a temporary basis. Your Father may overcome the withdrawl of the Thalidomide after a few days or you can ask his Dr. for something like I did.

[txnmomma]

Andrew.. I am so glad to hear your mom is responding to the Thalidomide. Thats great!

My dad was on Thalidomide at the end of last year and had to stop. The side effects for him were horrible. I mean really bad. He was hospitalized over Thanksgiving b/c of how bad they were..

BUT.. I am glad she is handling it well. Interesting how meds effect everyone different.
I hope her RBC’s cont to go up!!!

[Author]

Posts