Hi Gary,

My husband also has SCC of the right tonsil that had spread to the soft palate, the base of his tongue and 7 lymph nodes. He had 2 surgeries in Feb to remove the cancer plus 80 lymph nodes and began 35 IMRT treatments March 27th so we are not very far ahead of you.

Jack has just completed his 2nd cycle of chemo (cisplatin). He has a peg tube that we are finding has been extremely helpful in maintaining nutrition and hydration. One of the things that I learned from postings on this site is that if you can stay hydrated and take in enough calories during radiation and chemo you have less difficulties with side effects. That seems to be true in Jack's case. He's still getting the typical side effects but so far not as severe as they could be, and for that we are grateful.

I don't know what side effects, if any, Erbitux has but radiation has several that kicked in on week 3 for us. Jack is doing reasonably well all things considered because we were prepared for what was likely to happen and we were able to be proactive in planning with our RO and MO on how to handle each side effect. The cancer was a surprise, what to expect during treatment and the comfort measures to take shouldn't be.

The mask is a challenge for Jack because he's a little claustrophic so he takes Ativan before his treatments. He is getting amifostine subcu injections to try to preserve his salivary gland functions. That's apparently controversial in whether or not it actually works and there can be really bad nausea as a side effect. Jack is using zofran daily with compazine for breakthrough which seems keep the nausea managable and so far he isn't having horrible mucositis so we think the shot is working. He has found aquaphor and aveeno cream have helped the burned skin. Biotene toothpaste has been good and he's keeping up with his flouride treatments daily.

He has mouth pain and sores right now and is rinsing with baking soda and salt, and using lidocaine solution. Sometimes that helps and sometimes it doesn't so he also uses oxycodene when he needs to. He has trismus and uses a therabite exerciser to keep the muscles stretching. I have also heard from other members here that continuing to swallow during the radiaiton treatments is important, even though he is using the peg tube, so he is doing that as well.

Every case is unique and your experience may be totally different from ours but it's good to talk to other people who have or are going through this. The treatment is hard but doable, and I have found a great deal of hope and encouragement from this site. We've benefited from the frank discussions and the experiences of the other members and we are using some of their suggestions to get through this. Navigate around the site, there's lots of good stuff.

For us the shock is wearing off and we're trying to get information to understand what we are doing. I have found that there are many opinions among doctors and cancer centers that are presented very strongly so you need to do your own research and advocate for what you want.

Good luck in beginning your treatments next week, I hope all goes well for you.

Regards JoAnne