Lyle,

Your case sounds a lot like mine. I had recurring cancer that grew aggressively to where most of my tongue was removed in Feb 04. I was on a feeding tube and trach. The trach fell out on its own after 6 weeks. Still have the feeding tube but I admit I have not been as aggressive as I should be about taking more food orally.
This maybe due to fact ENT would not clear me for therapy until Nov. 04. I had 36 rad treatments in spring 04 and about a month after that I got a severe cellulitis infection where the neck dissections were done. They had to drain the area (loads of fun!) and put inin the hospital for 2 days with strong antibiotics.
I had a year of therapy and the first one had me use a syringe to "shoot" liqiuid to the back of my mouth. I am still using this method to keep my swallowing functions intact. My taste sensation is pretty good now. The only thing is that neither speech therapist had had much experience with oral cancer patients. If possible, try to locate a therapisy with experience in treating oral cancer patients, especially those who have had glossectomies.
I saw a maxillofacial prosthodontist about a year ago who fit me with a palatal drop mouth prostheses. My family tells me it helps marginally with my poor speech but it is not fun to wear so I don't use it much.
As far as getting the PEG tube out, I have read here about some people who have had tongue removal that had it out in 6-8 months. Guess they were more aggressive than me.
My neck is still stiff especially later in the day. I take a little Roxicet at bedtime and also restoril that really helps with sleep.
It is rough dealing with loss of tongue and you have my sincerest wishes for recovery. I try to be as positive as I can getting other interests and exercising.
Just as an afterthought, I read about a guy in Vienna, Ausria who had a successful tongue transplant in July 2003. Funny thing is I haven't read anymore about it in medical jourenals since then and don't know if he made it OK. Maybe doctors and insurance companies here don't want to advertise it because it is probably VERY expensive.
Well, that'sa a lot but feel free to contact me if you have any other questions.

Jim Haucke
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SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies