I have been diagnosed by my doctors of all protocal that there is nothing left for me except URBITUX, which is not a cure for anything, but might shrink the size of the pharangeal cancer and give me a little more time. The side effects, ones that are known, are horrendous - and most of the side effects are not known. I've had numerous surgeries, radiation, PDT, - you name it. Radiation is most distructive. I'm beginning to bleed from the site, which hurts like a drill. I had another Pet scan yesterday, so should know how much activity is foing on by Thursday, giving me an idea of how much time I have left. I've sooo much that has to be done before I can pass on - as if I had a choice.

Has anyone had experience with this new monoclonal antibody? Please quickly give my your feeling about its use. Thanks so much.

Geri Hoffman
Posted By: Markus Re: I've reached the diagnosed uncurable stage. - 06-11-2007 07:49 PM
Geri,
There are 3-4% of the cases where Erbitux causes serious side effects (they say). A lot of people seem to get the an acne like rash which can be treated.
You want to make sure (INSIST) that they watch you VERY carefully when you get this the first time. Things can happen very quickly (when you are one of the 4%). It may help to take family/friend along so that they can talk with you when you get this and make sure you are ok. Also, looking at this web site you will find that people have gotten erbitux for many months, so it can be tolerated long term.

More info on the OCF homepage, search for "Erbitux"

Best of luck!
FYI: If I could tolerate Erbitux (Cetuximab) I would take it, it is a promising approach. (I landed in the ER, so it is a no go for me)

M
Posted By: jordan Re: I've reached the diagnosed uncurable stage. - 06-11-2007 07:57 PM
I took Erbitux and didn't really have too many side effects. I got a slight rash on my face but that was it. I thought the side effects were very minimal-at least in my case. I had it once a week for 7 weeks.
Posted By: Joanna Re: I've reached the diagnosed uncurable stage. - 06-11-2007 08:30 PM
Geri,

A friend took Erbitux for more than a year and the only side effect she experienced was the rash.

Best of luck to you!
Posted By: JAM Re: I've reached the diagnosed uncurable stage. - 06-11-2007 09:40 PM
DEar Geri, To add to the above, my husband was on Erbitux also, and the only really hard to manage side effect [after the beginning dose] was the rash. We think it extended his life by close to 8 months and it might have been longer had he not had additional surgery [which further spread the cancer]. His Docs told us that he could continue to take it as long as he could tolerate it. Sending you prayers. Amy in the Ozarks
Geri,

I wish you all the luck in the world. Don't give in yet. I know you have been through hell and back but keep the faith.
I also took Erbitux and didn't have anything but a slight rash on my chest and upper arms (they tell me that if you get this, they know it's working). I took it once a week for the 7 weeks I was gettin my glow on (IMRT treatments).

As far as I was concerned, no big deal.

Hope this helps, even if a little.

Kevin
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