Barb --

If possible try to get Jim to get another opinion at a cancer center where they see a lot of bulky, agressive and extensive disease. Take a plane trip if you need to.

For example when my husband Barry started treatment at Hopkins there was another fellow starting out, who had a large invasive tumor of his palate, tongue, roof of mouth with lymph node spread. He was having trouble swallowing and was already in pain. He went into a trial with a targeted therapy (Tarceva) with an induction phase of three weeks (as I recall) of daily Tarceva. At the end of the induction his tumor had shrunk 50%! He then received chemotherapy and radiation (cisplatin and IMRT) for the usual 7 weeks, which is when we saw him every day as he was on same schedule as Barry. He had been very despondent when he entered treatment but was much more optimistic as the days and weeks went on, though of course it was a very rough time (as it is for most).

Wish I knew how things turned out at the end for him but at least he gave it a real fight and the last time we saw him he said that his reports were looking good.

I would definitely try to get to a CCC (Sloan-Kettering, Anderson, Hopkins, Dana-Farber, Moffitt, Mayo and others) where they see lots and lots of head/neck cancer patients and also, lots of clinical trials for extensive or recurrent disease. (In fact I think a second opinion is needed in most cases, if only to give peace of mind that you have explored all options, we went to Sloan).

As many have posted this is not a nice disease and not a good way to go...

Gail