Jim,

I too have been "stuck" on the tube for 3years 6 months. I had recurrent tongue cancer and a near total glossectomy. My cancer surgeon was reluctant to get me on speech and swallow therapy until my neck dissection area "healed" to his satisfaction as I developed cellutis infection after radiation in May 2004. So I got a late start and finally passed a swallow test in December 2005 after two esophagus stretches. I kept using a syringe but continue to take about 10 ounces daily by mouth to keep swallowing muscles active. I'm fortunate in being retired but I have taken a bus trip and took tube food with me. Recently I read posts by several younger people who had total glossectomies are are eating by mouth. So I I decided to bite the bullet and start intaking fluids directly from a cup. I found I could do it. Thanks to these courageous and inspiring stories I have finally decided to make a concerted effort to get off the tube some time - I hope sooner than later.

If you are on the tube for an extended period, let me relate some experiences that were not pleasant. I did not know or did not ask how often to replace the tube. After nearly 3 years on mine, I developed several infections where the rube goes into the belly. Antibiotics cleared it up but I was advised by a GI doc to get it replaced. They tried to remove it by pulling on it (OUCH) but it wouldn't come out. So I had to have an endoscopy under sedation for the replacement Feb 2007. I was told at the hospital to have it replaced every 6-8 months. I plan to do this in September.

My point is don't wait too long beyound 6-8 months to have the tube replaced. I learned the hard way. Good luck!!

Jim H.
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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