Hi Nancy,
So sorry you and your husband have become a member of our family. That's exactly what we are here, a family of fighters. We are here to support each other no matter what phase we are in.
You have gotten lots of good advice. I know it's hard to hear all the different opinions. I do agree with David regarding the surgery. Kevin had several nodes involved, testing positive for scc, but they didn't do any surgery other than to remove the primary BOT tumor. The MO felt it would weaken his immune system too much. Kevin pushed for surgery, but they refused and after the first round of induction chemo, you can see what we had from our signature at the bottom, the nodes shrunk down to the point you couldn't even feel them any more. We did one more round of induction chemo, then IMRT (x 60) and Erbitux. They wanted to do Carboplatin with the Erbitux but Kevin said no. Hopefully that won't bite us in the butt later.
Good to get the second opinion. The Erbitux has it's share of side effects as well.
Please keep in touch every step of the way. You are not alone.
Kathy

Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14