Gary,
Thanks for your input. It is encouraging. Yes, I'm a little concerned about the mouth opening getting worse after treatment. I think it is from her surgery because she lost part of the facial nerve as well as the hypoglossal and lingual nerves, both of which deal with tongue movement and sensation. I also think nobody told her to work on opening the mouth so it just got tight after surgery. She wasn't able to chew much due to the tongue numbness, so I think her jaw just got stiff from lack of movement. Does that sound possible? She is working on it now, and it seems to be getting a little better. She goes to the oral surgeon Monday to find out about the teeth extractions. I certainly hope they can do total anesthesia. She's also hoping she can maybe get the PEG tube put in at the same time. Did you have one during your treatment? She has decided it is a good idea, especially considering she already has some eating issues post surgery.

Thank you so much for your input on MEC. I'm going to check the link now. I have one other question for you. How do they check to see how you are responding to treatment? Is it a scan of some kind? I'm wondering how they can tell if there is still microscopic cancer, because that is what they found in mom's lymph nodes that were biopsied after surgery. She also had nerve involvement that was not a tumor, but at the microscopic level. Can they actually test for that?

thanks. Sorry I have so many questions, but it's great to hear from those who have been through similar things. God bless, Laura