We had a meeting with our Chemo Doc. yesterday to talk about John's ongoing Erbitux tx. His statements are as follows, and are very interesting. Compared to the data released on the Erbitux website as to % of various side effects experienced, his patients were experiencing way above what is reported. He has asked for a drug Rep to come to visit him immediately to discuss his patients' reactions to Erbitux. It seems that all of his patients have experienced most of the serious side effects and he feels that initially reported data is based on inadequate numbers as far as people taking the drug.He is looking for information on the best way to deal with certain side effects, while acknowledging that this drug is so new, no one may have that answer. So for now, we are in a holding pattern.

JAM,
My husband had bad reactions with Erbitux and the radiation. His mouth soreness and throat soreness increased more then just radiation alone. The docotors have taken him off of Erbitux and Cisplatin while he completes his radiation and he is doing much, much better now. My husands doctors (University of Minnesota) beleive that the Erbitux with the Cisplatin made his symptoms come on way to strong. In fact my husband says it almost killed, he thought he was going to die. I would be very careful about using the Erbitux.
Heidi

Amy
Did he specifically tell you what side effects his patients were experiencing? I haven't heard much about any side effects except for the acne rash and headaches?
Kim

Our chemo doc. told us that all of his Erbitux patients are experiencing more severe rash and over more parts of their bodies than the literature reports, also they are all having problems with the skin around their fingernails and toenails breaking down and bleeding.That's all we had time to talk about at that appt., but I intend to ask more next time . John went back today for his 1st treatment after being off for 3 weeks, but the Doc. wasn't there. By the way, I don't think these patients are getting this with radiation- at least in John's case, radiation was finished as of July 05. I hope we can all keep sharing what we are learning about Erbitux. Amy

I have just completed radiation and Erbitux. The Erbitux caused a mild rash, after I was through with the treatment and some breakdown of skin around fingernails but other than that I feel quite good. Waiting for results of a PET, MRI and CT. I have SCC of the oropharynx dx in 2004.

Nancy, Good for you and thank you for posting.The Erbitux tx. is new to many Oncologists and it's it good to hear from people who have had it. Could you tell us how many Erbitux injections you had and at what dose? Glad to hear you are doing well. Thanks, Amy

I had five tx of Erbitux and three weeks of radiation 2x a day. The radiation was rough but hopefully worth it. I still have a little scaly skin left from the rash but I can cope with that

I had good news today..my scans showed no evidence of disease. Hooray

Great news Nancy. Caulk one up for the survivor side !!

Hooray, Nancy! That's great to hear. Amy