Thanks everyone. Had first Erbitux infusion last Tuesday and rash for about 2 days that has since disappeared. Also a headache and achy for about 24 hours. A little scary in that he had a reaction to the infusion at first and had to get benadryl and solumedrol and they slowed the rate down temporarily. I was extremely impressed with the staff's response and knowledge and want to emphasize what others have stated on this board- go to an NCI CCC for treatment. Experience and a mulit-disciplinary team approach counts and I have seen that first hand. Start radiation tomorrow- how long before those effects start? I know everyone is different but from what I have read and heard it builds over time and the first week is not too bad typically?

Hi usually 3-4 weeks then the effects begin to show. At week 4 I was beginning to feel it and my tastebuds tanked! So glad you are getting top notch care!

Remember everyone can be different but Cheryl's timeline is the average. Some never have any problems and some have them from day one but I would guesstimate about 80% of us fall into the average column. This is still the rtime to eat eat eat and eat more, especially all of his favorite foods. Taste is the first to be affected and that doesn't come back for many many months. When taste goes so does appetite and desire to eat and it couldn't come at a worse time so prepare him mentally as he must consume at least 2500 cals a day from now until at least the end of his first year post Tx. Also don't forget the water, 48 ozs a day. Both are hugely important and the lack of either can lead to complications on top of potentially nasty side effects.

The rash is no indication wether the Erbitux is working or not. That is a false rumor. Even an oncologist that I had a meeting with told me they just tell patients that. Water consumption, liquids, should be about half the persons body weight in liquid ounces daily, so everyone is different, and probably most don't drink enough.

[quote]Additionally, for the patients treated with cetuximab, overall survival was significantly improved in those who experienced an acneiform rash of at least grade 2 severity compared with patients with no rash or grade 1 rash (HR 0�49, 0�34�0�72; p=0�002).[/quote]

Paul, I think your oncologist might have been having a bad day when he stated that there was no correlation between rash and effect. There are dozens of studies that show there is a survival benefit associated with the rash caused by Erbitux. As there are too many to cite, I have just inserted a quote from the Bonner group whose work is probably most recognised when discussing Erbitux.

For those who want to read the whole thing, publication is Bonner et al. The Lancet Oncology Volume 11, Issue 1, January 2010, Pages 21�2

Of course there are always exceptions to the rule ... the appearance of a rash does not guarantee survival, and neither does the non appearance of a rash mean certain failure. This is possibly why the oncologist makes such a statement as the lack of reaction of the patient does not seem to cause the patient to have a switch of therapy??? Maybe someone else HAS had this happen and can correct me.

Thanks for posting Karen- it was very interesting (and good to hear since my husband has an Erbitux rash). This article is also exactly what our MO and all of the cancer experts we have seen have told us.

Thanks Karen, but I read a study or assay that a rash is not indicative of Erbitux working, so I asked the oncologist, and said it was true. I also read a study that it may be an indication that Erbitux works. Like lots of studies, etc. they often have different findings. This was not my oncologist pet se, but one I had a consultation with at a renowned hospital.

In the OCF news section, there are also several OCF vetted news articles on the subject, the most recent dated January 5, 2012 and November 9, 2011.
http://oralcancernews.org/wp/?s=Erbitux+rash

As far as studies go, the jury is still out on whether Erbitux as a single agent chemotherapy works at all, rash or no rash for the majority of HPV patients. Some doctors say it's because the HPV cancers react so well to radiation that the benefit of Erbitux doesn't show up against the comparison groups, other doctors say it's because Erbitux is not effective as a single agent, others say it's just luck of the draw that the negative studies had so many of the 5% for whom both side admit Erbitux is worthless. In a few years, we'll know the results from the current clinical trial testing Erbitux vs platinum. In the meantime, it's all just opinions.
My medical oncologist at the Georgetown Lombardi Cancer Center ( a CCC) will no longer administer Erbitux as a single agent due to the high rate of recurrence in his HPV patients whom he had used it. (myself included).
It's so frustrating and scary for patients and caregivers to have to deal with the multiplicity of opinions on Erbitux from doctors and not fair at all.
Lady1: I hope it turns out well for your husband and that he is an Erbitux success story.
Charm

To clarify Charm's statement about the 5% of patients Erbitux is worthless for, it's due to K-ras gene mutation in the cancerous cells. This is very prevalent in Colorectal Cancers (around 40%) and is the reason patients are gene tested before treatment.

This happens in around 5% to Head & Neck Cancer patients "However" to my knowledge gene testing isn't standard for HNSCC patients to see if they fall within that 5%, but it should be. Where 95% won't be affected by this, it could mean everything for the 5% that fall in this category.

Great response Charm, thank you.