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

Welcome Nancy,
sorry you had to join our forum. As a new member myself I can say that everyone on here is amazing and so helpful. I had a neck dissection too as there was 1 highly suspicious node and 1-2 other rounded nodes. I ended up with 9 involves nodes out of 67 which means there was 6 in there that they really didn't know would be a problem until hey were removed so I wouldn't say the neck surgery was a waste of time. At least you've got peace of mind that its all clear there now.
Best of luck for your next appointment.
Cheers, Mel.

Today we meet with the Oncologist to discuss his opinion on adding chemo to the radiation. Have myself armed with tons of questions and information that I have gathered. They want to use Erbitux once a week. Husband is at his dentist right now getting a deep cleaning on one side of his mouth and returns Monday for the other side. He has begun Flouride (sp?) already.
Thank goodness he has great dental health right now. I am so consumed, angry and frightened that I find it very difficult to function. I do what has to me done, try and smile but the tears keep flowing. And we have only just begun this journey.
I will try and figure out how to do a signature at the bottom of my posts, but I do not have all of the proper diagnosis info at hand. We have not been given a formal sheet of paper with that information, just what our ENT has told us verbally.

Thanks for reading andf all of you support.

Nancy

Good luck with the appointment Nancy. Don't be too hard on yourself, there is nothing easy about this and many of us went through this before the appointment with oncologists. You already have a good advantage.

Keep good notes and if you can't get it all, stop them and ask questions. No questions implies you have none. Keep copies of things if you want to document at home later. I can tell you are organized and will settle into all of this fine.

Ed

Thanks Ed! Just tried my best to add my signature. Looks pretty lame, but gets the info out there! I will always question because that is who I am. I never just accept things as they are and I always am seeking more. However, I realize at some point my husband and I will need to make that all important decision on treatment and begin that journey.

Nancy

I just wanted to respond to the note that asked why the neck dissection when the rad/chemo would do the trick. We had the same question to our ENT.. after the surgery, and she said that she was sticking to the tried and true methods. I then had a conversation with another mom at my son's athletic event.. she works at a nearby biotech firm (ya know here in silicon valley/sf).. and mentioned that they are also working with new methods of treatment that would reduce/eliminate radical surgeries. Be sure to ask your dr if they are familiar with the new practices!

I had already asked that question of our Surgeon and he does not believe in just radiating and chemo. He told us to go to MD Anderson if we did not want the surgery, but that he felt there was more risk of a reoccurance if we just did rad and chemo. He believes in removing the cancer and then aggressively following with tratments appropriate for each case. Our meeting with the oncologist went very well. He said with surgery and radiation we would have about a 75% suvival rate and if we add the Erbitux, it goes up to 90%. He has had nothing but excellent results combining both. The radiologist is Monday and our second opinion next Thursday at Siteman. Whew! Took lots of notes and asked tons of questions. Husband walked out and already scheduled the trial session for Ebitrux for the 25th. We can always cancel. If it is well tolerated then he will have 1 1/2 hours of it once a week along with the radiation. Husband is ready to go and I still want some answers! God love him!

Nancy