Hi, My mom is in her third year of surviving throat cancer, stage 3, underwent daily radiation for 6 weeks and chemo , no surgery, it was hell but she made it. She had to have a peg tube for nutrition. Her dentures no longer fit and her mouth opening is restricted to the point where dentures they say can not be fit in anymore. My question is has anyone else been unable to resume eating? She has had a swallow eval and they say she can swallow and drinks water alot for dry mouth. My mom, Pat, when I ask if she could try to eat says she does try but everything tastes terrible and she can not get it down with out gagging. I am so proud of her for making it this far and surviving this ordeal but she is loosing weight and seems emotional messed up. Is there a formula with more calories she is taking osmolyte? Is it psycological that she can not eat? How can I be supportive and not to pushy? Has anyone else kept a peg for this long? I would appreciate any info
thanking in advance
A worried Daughter,
Laurie

Laurie, Eating is tricky. If you stop for prolonged periods of time it can change muscle control then you need to re-learn the process all over. I had treatment 10 years ago had a tube for 7 months and then started eating for 9 years. In May 07 got asperation pneumonia and am on a peg since then. I continue to asperate and am doing every exercise known for helping this. So far I am still asperating so the good news is you mom is not according to her swallow test right? I have not been on a peg 3 years but the first time was 7 months it was very difficult to learn to eat again. I literally had to chew a lot and wash it down with liquids. I also have no slavary glands and no taste. It could be psychological in part and being scared of gagging. There are other liquid supplements Carnation VHC is 560 calories per can I use this 4 a day. Just keep trying to encourage her start with soups and soft foods and work up from there.

Fontaine,
I know exactly what you are talking about. My father went on a PEG temporarily, 4 years ago. The radiation created scar tissue, and muscle immobility. After swallow studies, it was determined that he would never eat normally again. But at least he's alive. Keep the Faith.

Vickie M

After treatment issues
I posted several months back, and am worse now with the mouth ulcers than I was then. I finished rad on Jan 11, 2007 as well as chemo. No one told me at that time that the after effects of treatment is as bad in some ways as the cancer itself.

I am totally at my wits end and am looking for any help the members can give me in regard to this problem. I'm going to list everything I personally have done to try to help myself.
Taking lifovsinr 2% visc 4 x daily. Majic Mouthwash, over the counter colgate orabase, zilactin-B, hurricaine jel.

Went to 4 doctors yesterday - my dentist, my oral
surgeon, my ENT dr and my pain management doctor.
I was on a high time released form of oxicoidone which was not helping so he switched me to morphine sul 10 mg/5ml sol. I started on this today. Bottom line----------all doctors said they knew of NOTHING to get rid of the ulcers and
there was no guarantee oxygen therapy or acupuncture would work. I am scared to death because I had the PEG tube removed 2 months ago and the ulcers are so much worse. They are of course on the side of my mouth that was radiated. I am getting extremely depressed and
the quality of my life is going down hill. Please reply to my post with any information you
may have. I am afraid I may have to have the peg
tube reinserted.

Gaatagirl,

You need to ask them about Hyperbaric Oxygen Treatment. 8 months is a long time to have this many sores still in your mouth. The HBO treatment will help, it did mine.

Minnie

Minnie, thanks for your reply. Can you tell me a little about Hyperbaric Oxygen Treatments and how many did you have?
Thanks, Judy

Gatta,

Here is an informative site on HBO.
http://www.drcranton.com/hbo.htm
This, along with Minnie's personal experience and advice, should answer most if not all of your questions.

Minnie,
you are a champion and someone for all on this site to look up to.

My thoughts and prayers to you all.

Mike

Laurie and Vickie M

did your parents experience any problems during the 3 and 4 years on the tube. Has it been replaced or malfunctioned at all during this time? Does he pump feed or syringe? Any info would be appreciated? I have hear long term peg tube use can be troublesome. Thanks for any feedback.

Thanks for the input. I shared with my mom who does not have a computer. She was so happy to hear that she was not alone. laurie

Laurie,

Has she tried liquid nutrition like Nestle's Probalance? I took it through my PEG for years and then started drinking it chilled using flavor packets I ordered online.

I can attest to long term PEG use problems as I had mine for nearly 4 years before it was removed last week after I hemmorhaged at the insert site. I am now totally on an oral diet but the supplement gives one all the nutrition needed without chewing.

If you need anything further, let me know. We are with you on this site and she is not alone with you by her side.

Jim

Tongue cancer glossectomy Feb 04 - PEG then to Oct. 4, 2007