Hi Hillary --

My husband Barry was also treated at Johns Hopkins and got carboplatin and TomoTherapy-- he also got a PEG and never used it but that was the exception. He is now 6 months' out from end of treatment, has had two PET/CT scans -- all clear, no sign of cancer -- and we met with our RO (your RO, too I'll bet) and he was very pleased with his progress. We also were told that if Barry were starting treatment this month, rather than last August, he also would have gotten Erbitux and tomo, possibly plus carboplatin . He took the amifostine all the way through, but not on chemo days to avoid nausea. It was pretty hard but worth it, he has pretty good salivary function now. The carboplatin (given in 7 weekly doses) was a non-issue to him (his words). He had no surgery post-treatment, neither his RO or MO recommended it.

I think you made a good choice for treatment, Hopkins is one of the three top CCCs in the country and we found the staff to be almost universally caring and approachable. I think the ability to ask questions and get straight answers is very important -- so don't be afraid to ask them!

Our nurse says that, in her experience, the patients who are best at following the instructions for oral care etc. during treatment tend to do the best. So congrats to Jeff on being a good patient!

I will send you a private message in case you'd like to call us and compare notes -- we are asked not to discuss specific doctors etc. on the Forum.

Gail