Supposedly due to radiation damage, I am aspirating everything. I've had to go to eating only the canned supplements (Osmolite) and crushing my pills so that everything goes through the PEG tube and nothing by mouth.
I have a speech therapist through the clinic who has given me exercises to do. They cause a lot of pain though and the progress is very slow.
Can anyone relate to this problem? I'm so discouraged. Thanx so much.

I am sorry for what you are going through... I can't personally relate, but my father can. I have been his caretaker and I have watched him suffer for about a year and a half now. He has had a PEG tube since March 2008, and has not had anything by mouth since then. He is fried as well from the radation and still cannot swallow and he has not had radation in over a year. His cancer went into remission last year and he started working with a speech therapist, and it was helping... he could swallow here and there, but his barium test showed inconsistencies and he was aspirating, so the drs were worried about infection so they advised against him eating or drinking anything. Now the cancer is back and he is having more troubles, I hope that I am not discouraging you with your recovery but I just wanted to expain a bit... everyones different. My dad has had so much trouble with his PEG tube. He has gone through 7 tubes, because he was putting way to much down it for weight gain... he popped it a few times, clogged it.. it has just been a total mess. Be careful how much and what you put down it... I am very familar with all of this. I have watched my dad go through alot with his oral cancer. I hope I was of some help and didn't freak you out... I will be more than happy to answer any questions about it. My father's case is very simalar to yours, he is 68. I know what you are going through... hang in there. He is having a really hard time with his speech, do you have that problem?

Nancy

the aspiration page on OCF is being revised. Here is a link to swallowing problems: Dysphagia Very good information and knowing the right terms helps talk to your therapist.
I failed my Barium Test in March and have been on the PEG now since then, with another Barium Test next week. My prothodontist is making me a palate drop - sort of like a retainer but made to fill in where my tongue no longer goes after the surgery- to help me swallow so I will have it tested to see if it helps. Plus I am starting on a second round of therapy and trying electrical stimulation - VitalStim which Georgetown Univeristy Hospital offers. It is so hard not to have had even a sip of water or a crumb of food all these months with no improvement in sight,
Be strong, and know that with 6142 members, thousands of us can relate to what you are going through. Life is very hard for us oral cancer survivors but we can make it
charm

Nancy,
After my tx, I was starting to eat. It was slow and painful, but I was getting back into the swing of things. Then came March 2 and my ND. I have not be able to swallow since. Swallowing study and CT scan shows that my epiglottis shows signs of thickening with very little movement at all. I did not asperate but the "potential for asperation" is there.
All solid food gets stuck in the back of my throat. I have to muscle everything past the epigolttis. I can swallow water. My speech pathologist says there is nothing to be done but wait for the swelling to go down and excercise. My gag reflex is coming back, slowing. Babyfood gets stuck. I have been working on it since March. I have given up a dozen times. I get sad, frustrated, pissed, hopeful...I gave my ENT a copy of the studies, he did not order them, he called me the other day and has refered me to a GI. I started thinking "Whoopy, now someone will fix me" My speech pathologist popped that bubble telling me that she didn't think he would be able to do anything. I will still see him next week, of course. But I am less hopeful. So while are problems might be just alittle different, I completely understand were your coming from. I just want something with some taste. Family is not making it any easier. Everytime I speak with one of my family that live out of state they want the "eating update". I understand that they are just worried and care, but if something were to change, do you think I would let them know?
Amy

Charm,
I've been doing the VitalStim on and off for a while now. When my gag reflex started coming back, I started feelin the electrods much better. Now if she turns it all the way up, it hurts. This is suppose to also be a good sign. We'll see.
Amy

If he is constantly popping his PEG, he might consider a low profile Mic-Key: http://www.totalhomemedical.com/kiclbalowprg.html. They come in a number of sizes all the way up to 24French!

The balloon is inflated/deflated by a syringe of water thru the entry on side, so it is easy to install. There's even a You-Tube video on doing it.

My husband has been in the hospital for 3 days. He's had a terrible time for the last 6 months with the radiation side jaw. He developed 2 abscesses on the outside and his maxillofacial dr. referred him to infectious disease dr. The ID dr. put him on pump IV antibiotics, and he was doing much better. The jaw pain was diminishing, and he was eating. He's been in the hospital 2 other times since Jan 1: Once with a lung abscess and more recently (end May) with pneumonia. He's been having a very hard time swallowing his meds. Then last Sat., the jaw pain got so bad I took him to ER. They are controlling his pain, but they also noticed his right lung is getting cloudy again. He definitely has dysphagia and now they want to do a PEG. We were so lucky that he got thru the radiation without a PEG. We've had a wonderful 7 years.....and I don't mean to complain. On Sat., we celebrated our 41st anniversary. Lately, I've been wondering why the radiation oncologists didn't explain what could/would happen years out.....and how we should approach these issues......I needed to vent before I go to bed...it's been a tough few days coming home to an empty house. I miss him so much....I need to be strong for him.