Hi Kim. Like you and Dave, last spring I was in a serious information gathering mode, and this forum was the best place for real life info.

Okay. My tumor was in the retro trigone area (behind where wisdom teeth would be). I opted for the surgery and graft, the modified neck dissection, followed by 7 weeks of daily radiation and weekly chemo. Although I emerged from the surgery with gigantic neck swelling, there was no pain and I had plenty of energy. Lateral massage reduced the swelling greatly and fast. After the radiation (I was fortunate in having the newer IMRT variety which may account for the outcome) and chemo I felt just fine and if I were working, could have gone right back. I would guess the fact that I was in great physical condition going in, with a positive mind set, had a bearing on my good outcome. I don't plan to have to do this again, but would choose the same plan if I had to.

To be perfectly honest, I will tell you that the chemo supressed my immunity to nothing and shortly after finishing the above-described treatments and feeling wonderful, I landed in the hospital for 8 days in isolation with a galloping infection. This, and not the earlier treatments, laid me out flat and I am still getting my energy back.

I still have the PEG only because I have just front teeth remaining which do not chew well at all and at this point I am particularly concerned about receiving balanced nutrition. As soon as my blood count is normal, I will switch to protein enriched drinks I make myself and lose the tube.

I hope this helps. I am sure you will get other detailed answers. Please let me know if you have any questions I can answer.

BTW, I was surprised and pleased to find that at least the doctors I had contact with appreciated the fact that I was well so informed. This is an improvement over the way things used to be.

Good luck to both of you!

Joanna