Thanks to everyone for your responses and support. I know you all can identify with our anxiety.

I understand Charm2017's abhorrence of Erbitux/cetuximab for obvious reasons. I wish I could find the reference he quotes in the beginning of his post "Erbitux and HPV do not play together well" because that is the only clear reference I've been able to find that �suggested that HPV-positive patients treated with Cetuximab plus radiation have worse outcomes than patients treated with cisplatin and radiation.� I have searched quite a bit and was never able to get more information on that.

Our R.O. clearly does not believe that. Once again today my husband specifically asked our RO why my husband should enroll in the clinical trial (RTOG 1016), and the RO said �if it were him� he would enroll and hope to get the Erbitux arm. The RO WAS aware of the study (ROTG 0522) with the negative results of the additive effect of cetuximab on top of radiation/chemo. We both have confidence that the RO is keeping up with the literature around this issue.

We also feel we have to consider the possible long-term effects from the cisplatin vs. the cetuximab. My husband has to make the ultimate decision whether to enroll or not. Of course, even if enrolled, he may not be chosen for the cetuximab anyway.

As far as a PEG, we discussed that specifically with the RO, and his belief is that you should not start with one. He told us about the importance of keeping up the swallowing function, and his standard is to not use a PEG unless necessary. I�ve read other posts about how people�s PEG�s were �life savers�, so I do have to admit I�m a little wary on that.

So much to learn with so little time...


Caregiver & Wife to Husband age 61 Dx 06/08/12
Stage IV BOT Cancer T3N2cM0
Non-smoker, light drinker
Tx ended 8/27/12. 35 doses rad + 2 Cisplatin doses 3 weeks apart. PET/CT scan 10/24/12 - NED BOT. 2 small hot spots, one one on each side in lymph nodes deemed to be result of Tx at this point.