Wendy,
You've already read some very good advice, but everyone has a slightly different take on their treatment, etc. I did not have a PEG. For some reason or another, it was not an issue, although I decided at the outset I was going to make it my goal to keeping eating in the usual way. However, I did not eat my usual foods after two or three weeks. I had to modify to keep it going. I had no weight to lose either, and I really did not lose more than 2 or 3 lbs.

Sounds like you will probably have a good treatment team, so no worries there. I do not know about you keeping up on your job, etc. That would have been difficult for me personally. You can and should exercise regularly. I walked every day, exercised otherwise on several days. It is terrifying, it is hard to accept.

One thing you might check out is there is currently a study going on at MD Anderson, another great place to be treated (which is where I was), that is researching the use of acupunture to retain your saliva during treatment. You might check their website on it. I believe they had some good results on what I think was the pilot study (might be incorrect there)and now are going to study it with placebo. You'd have to pay for it yourself, but it would certainly be worthwhile if it worked for you. I tried it for the first time last week (9 months out of treatment) and, you know what, I do have more saliva. I did have some already, but I was not really happy with it, but I guess I could have waited the year or more I was told to expect. Anyway, if you had more saliva going through treatment you would be way better off. You'll have to clear it through your docs though.

Sounds like you have a lot of good things going on in your life. You'll make it through this using the same strategies you have already employed.
Best,
Anne



SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021