Deano --

First, since you have a base-of-tongue cancer, if you are a non-smoker, there is some chance it is due to human papilloma virus. At Hopkins, where my husband was treated, they test every tonsil and BOT cancer and are finding 60% or more are HPV positive. I hasten to add, this will NOT change treatment protocol but it does seem to mean a better response to radiation and also, a lower rate of recurrence. If you want to find out about this, ask your oncologist, I would expect MDAnderson can test this -- Hopkins also tests outside samples, including pathology slides if that's all that's available: http://pathology.jhu.edu/labservices/hpv.cfm
(search OCF web site for more info on HPV)

As for putting this behind you, my husband was diagnosed in June 2005 with Stage III/IV tonsil/BOT and two nodes, HPV+, he went through 33x radiation (tomoTherapy IMRT) and 7x chemos (carboplatin), and also took amifostine most days. No surgery other than his initial tonsillectomy when he was diagnosed. He got through the treatments in good shape (considering!), ate all the way through though at the end it was mostly liquids and purees. He did lose about 20 pounds, but much of it in last week when he got a blood infection. Finished treatment end of September '05, by mid-October was out birding again though of course for limited amounts of time. By early December was attending various pre-Christmas social functions and could eat regular (albeit carefully selected) restaurant food, in January we went on rather arduous birding trip to Sierra Madres in Mexico, where he was out all day, however he found that most Mexican food was still too spicy for him (ouch!). Since then he has continued to recover well, I would say pretty much back to normal re eating etc. except still needs to regain about 5 pounds weight and drinks a lot of water when he eats dry foods. Also foods spicier than "mild" salsa still burn too much, so still not 100% back to normal in that regard.

Side-effects which nurses and doctors forewarned us about (and tried to mitigate) included trismus (restricted jaw opening) -- used a TheraBite device all the way through & continuing up to present, dry mouth (thus the amifostine use, nasty stuff but seems to work, also he now takes Evoxac, has about 80-85% salivary function thanks also to precision of his tomoTherapy radiation), hearing loss due to cisplatin (he already had high end hearing loss due to infections as a kid, so MO gave him carboplatin -- a less toxic drug which works about as well), mucositis (mouth sores) -- tried various things to ameliorate, mouth rinses, GelClair, l-glutamine rinse, aloe vera swish -- something seemed to work as his mouth didn't get as raw as many folks' do, but still got very painful, was on 25 mcg Duragesic patch for some weeks including after end of treatment. He took 500 mg. l-carnatine per day to reduce fatigue. The hospital also monitored his red blood count carefully and would have given him Procrit if needed to prevent anemia, or platelets if needed as well. He didn't have to have this, others did. Depends a lot on individual's response to the chemo drugs. The hospital was careful about adequate nausea control, which requires rather expensive drugs but worked. If you go to the OCF web site and look at the "side-effects" pages, they full of vital info. Much of what we knew beforehand came from these pages.

Barry is one year out of treatment now and all his scans etc. have shown "no residual or recurrent cancer" (quote from report) and all his doctors think he is doing great.

Barry was telling me just today that he is not looking back anymore but feels it is now time to look forward to the rest of his life! We are going to Panama in December and perhaps Uganda in March., no time to sit and worry!

Gail