Hi everyone: It's been a while since I last posted but I need help from any one of you.My husband Joe has been living on a peg tube since June 2004 when he had surgery for epiglottis cancer. His ent promised him the world. He had surery about 3 mos ago. His ent dr. cut his muscle in his throat. He said this would help him to eat and also to get the mucus out easier which he has had since his radiation ended about a year ago. I don't know how to help him cope with this. He has lost about 100 lbs. since his surgery in 2004. I think the two cal and ensure plus are just keeping him going. He is not really gaining weight. Maybe 1 or 2 lbs. Does anyone else live off a peg tube and is there anything else he can use to help him to gain weight? Any advise would be greatly appreciated. Thanks Roseanne

Rosie 1303, Do you have a way to get another opinion from another HNC specialist? As to the mucus, do you have a mouth suction machine? It really helped John. My husband was on 2cal also[he hated the smell]it did help him from getting too thin. How many cans a day is Joe using? Can he swallow anything? John's oncologist told him to put anything down the peg that would go, purees, soups,etc. to help keep his weight up.It sounds like youall are having a really rough time. I'm sorry. Amy

There are several people who have posted here that were on lifetime PEG feeding. In conversations with them, I learned that they were each taking 9-10 cans of food a day ( I lived on 8 a day for almost a year with supplimentation of smoothies.) Remember that he needs to take in over 2000 calories a day. Read the labels to do the calculation, and don't forget to add water for hydration if he isn't take large amounts by mouth.

I have just recently started using my PEG. I am using the new Carnation VHC product. I has 560 calories in it compared to the 300 +/- of the others. It only comes in vanilla flavor but with the PEG that pretty much does not matter.

My dad has had a peg tube for about two years now. As others have said the doctors have told him that he can put anything down it as long as it is in a liquid time form. He also has been taking in 8-10 cans of food. What kind of food is your husband on? My dad has been on Promote with fiber and it seems to have helped him quite a bit. He has been maintaining his weight since he's been on it. Hope everything works out for you!

Rosie,

I had posted in one of your earlier topics. I think your husband had his epiglottis removed, right? For some reason I can't find the site on Google, but there is a Hospital in Pa. that had a surgeon that specialized in epiglottis reconstructive surgery. I think I sent the name to you, did you call there? It was in Philadelphia I think.

Glenn

Hi Rosie,

Sorry for my delayed response. My mom has been living with her peg since August, 2003. She's generally able to get 3 to 4 cans of two-cal down a day. Her problem is difficulty swallowing due to radiation. Her throat has been stretched twice. The doc suggested doing it again, but given the info I have, I don't know that I'm comfortable doing it anymore. The only other thing I can think of, and I'd talk with the doctor before doing it, is consider one of those powder drink mixes. There's one called Weight Gainer 1850 that I got for my dad when he was diagnosed with cancer. It's high calorie, low fat with a bunch of vitamins. I found it at a store called GNC. I think it's a national store so you should be able to find it in your local phone book. Wish I could offer more suggestions.
Best regards,
Dave

Hi. My dad has also been using a peg tube as his sole source of nutrition for about 14 months. His throat has been stretched about 5 times and 3 of those were unsuccessful. He seems to have a 2cm stricture in his esophagus due to radiation, so it will take quite a few more stretches before things are better. Anyway, for now he has just been switched to the new carnation vhc product and has gained 3 lbs in about 3.5 weeks, so it is a great product and something to look into. Before that he used ultra cal and boost plus and was able to maintain his weight but never gain any. Also,we did vital stim therapy that seemed to help him gain more control of his throat muscles in general and seems to be very helpful in head and neck cancer patients. Anyone wishing to talk or want more information is welcome to send me a message directly. God Bless! Christy

Rosie

My hubby just started using a peg tube and the oncologist recommended a product called BENECALORIE. It contains 300 calories but its only 1.5 oz

I just oredered it online and it sounds like a great form of fortified nitrition in only 1.5 oz

I hope this helps
Lily