Well, we are on our way. Dan had his first Chemo of Taxol and Cistoplatin on Monday. He will have 5 more on Mondays. He is having 6 weeks/5 days a week Rad at 70 gray. First days were very rough as everything ran late and we had to sit for hours because we were late to each appt. due to their errors. But it is the University of MD Medical Center and the doctors are very good and they have a tumor board which it helpful as Dan's tumor could not be all removed with surgery since it's around his carotid artery and in the wall of his jugular. He had a PEG tube inserted Tuesday which is sore around the site, but hopefully will get to feeling better soon.

A few questions. On the left side rad area, the tumor is right behind and under his ear. The rad is really burning and hurting his lower ear lobe. We have asked but they are not sure anything can be done as it is in the direct shooting site. He also is burning pretty good already for only 4 days. They gave him Aquaphor to put on after rad each day, but during afternoon and evening he puts a cold compress against the area to relieve the burning some. He has major constipation from all the drugs, but we are trying to work out that with some prescriptions and some over the counter like Colace and Milk of Magnesia. It's become an everyday problem, which is difficult because he was always regular every day! Feeling some nausea from the the chemo but has some pills for that, too. I don't think it will be long before we will try using the PEg tube. They said 8 cans of Boost Plus everyday, which was supposed to be covered by insurance, but found out yesterday it is not...neither is the flouride trays made by the dentist for teeth protection.

Anyway, just looking for any suggestions to bowel problems, lots of burning already in first week, and any other info you might have as we struggle through the journey.

Also, has anyone else had a tumor that they could not take during surgery because of where it was and attached to?

Thanks so much for all the good info on this board. It has enlightened (and also scared) me but I feel like when I go to meet with the medical professions, I am in better control and can ask them questions that they are quite surprised about and usually answer it but have been told I read too much!!

Dan, Bob and Brian - I have so appreciated all the information and personal experience you have shared.
Thanks,

Debbie

Debbie/Caregiver/wife of Dan, diagosed with SCC tongue, Stage II/III, 1/3 tongue removal, lymph node dissection both sides of neck, skin graph 7/30/03. Left tumor found - radical left neck dissection 12/24/03. Could not get all of tumor/wrapped around carotid artery and in wall of jugular. 1/12/04 beginning of 6 doses of Taxol/Cistoplatin once a week, and rad 70 gray 5 days a week/6 weeks.