Chris,

My husband is finished with th 33 radiations and 3 chemos with three more chemos to go. He had a small sore on his tongue that has now turned into many sores. Everyone is different but I'd say the last 2 weeks of radiation and the first week after radiation has ended has been the hardest for him. I would say the sores got progressively worse. If not for his mouth sores he would be in much better shape. He says his mouth sores are a 10 without meds and a 5 with. It has really kicked his butt. We struggled with pain meds and realized how important it is to control the pain level. He is now on a slow morphine release tab 2 times a day and morphine tincture low does every three hours as needed. It took awhile to get the pain meds right. He puts Colgate Orabase ( we tried others but Colgate seems the best) directly on the sores and he gargles with magic mouth wash to numb the mouth. We did elect to get the PEG half way through and our happy with having it now. He can hydrate all night and get nutrition down when it is too painful to swallow. He couldn't afford to lose lots and lots of pounds as he was skinny to start with. He lost 25 lbs with the tonsillectomy before the treatment even started. He has lost a total of 25 lbs, so 10 lbs from the actual treatment. He would have wasted away without the PEG and would have had to go to the hospital a lot to rehydrate. The PEG is a personal choice. For us, a life saver.I go to all his appointments and am really an advocate with all the meds and getting what he needs. He would probably not be so pro-active if he went alone. Also he forgets to take his meds if I don't monitor them. He is also taking Diflucan every day for thrush.

Once we increased his meds he couldn't drive to treatment anymore. It would be a good idea to line up people to help drive you.

Now is a good time to re-evaluate your meds. He is on cispaltin, no hair loss except two spots from the radiation but lots of nausea after chemo for a week.
Ativan under the tongue at bed time has helped him relax and also helps with nausea if you have that as a side effect. I didn't read that you did. Hang in there. We are thinking of you.
He just finished radiation last Tuesday so what you are going through is really really familiar and seems like yesterday ( it kind of was yesterday!)

Vanessa