Hi Sandy. When we met with John's RO he is the first one of the doctors who brought up the PEG. We knew nothing about any of this going into it. John in the beginning absolutely refused it said he wouldn't need it. His RO told him he only had two patients make it completely through treatments without one. He STRONGLY advised John to get one saying that once the treatments got started he did not want them to stop so he could have a PEG placed. He told us that the body fights a lot harder when it is properly nourished and hydrated. John reluctantly agreed and got one two weeks before treatments started. He didn't start using it until around week three of treatments. Even with it in he lost 30 lbs. He managed to avoid being hospitalized during treatments for dehydration. He continued to swallow liquids every day so he never lost that ability. He had the PEG removed 2 1/2 months after treatments were over. Let's face it no one is "comfortable" with one or wants to get one. We looked at it as just another tool to fight this cancer. Good luck!

I too made it without the PEG. I hindsight I'm pleased with my decision but it was VERY difficult. I too had little margin to lose weight and did look scary thin. The plus was that my eating and swallowing ability came back quickly. My wife would say that it created more stress. As David said, my Docs all said that they could use the nasal tube if needed.
All the best,
Rob

Steve had the Peg Sandy and it was a godsend to us. But it wasn't easy. He got the peg about 3 days after his first round of chemo, when radiation had also just begun. 3 days after his chemo his immune system was plummeting so not a good time to have an open wound in your stomache. You guessed it, infection. He spent alot of time in hospital because of this but once he got out of there it truly helped us alot. He lost alot of weight after each chemo round so the time we had between chemo's when he was feeling good that peg and pump helped him to put on as much weight as he could. Which was lucky because each chemo he would lose it again. It kept him going and was also a great relief to me and to Steve. It took a huge amount of pressure off him when it came to eating and made it easier for me to keep up with what liquids and calories he had. We would set it up of a night with the pump and it would work away all night putting the calories into Steve. His weight dropped to 51kg (not sure what that is in pounds but it's very low) fully clothed in his winter clothing and boots. For a man standing 181cm he was way underweight. Without that peg getting the weight back onto him between chemo's would have been impossible. Yes he lost it again because of chemo but it kept him at a level that we could deal with. Without it I have no doubt that he wouldn't have made it. It was our lifeline. Peg's are not easy and are not an easy choice but Steve and I are glad that he had his. He will be one year peg free 3/3/11. One more week away

Thanks for the feedback. Each time I check back, I read something that I hadn't considered. The ability to fight infection when getting it placed is something I didn't realize was a possibility. But, that's huge! It's good to preserve the swallowing function...so this is a tough one!

It's nice to hear how people were able to get it removed soon after recovery and avoiding dehydration is near the top of my list of things to avoid. He's been in the hospital for that one with a throat infection.

I'm passing along the information and trying not to have a bias--really hard not to have one.

Thanks, everyone!

Sandy

my hubby has no teeth so the peg was a brilliant option. we got told to get it sooner rather than later too. he can eat 'some' soft food, but not enough nutrients etc so he has 2 cal at least once a day to retain weight & vitamins etc......he won't be able to get teeth because the radiotherapy killed all the skin around his jaw, so looks like the peg is here to stay......

Jeanna, thanks for writing this. I am very much like Rod. I cant eat enough of a balanced diet to do without the tube. If I could get over the awful taste of the formula and drink it then I would be tube free. I just cant drink that stuff! Did you ever take a good whiff of it? The smell alone is enough to knock you over.

Steve would never drink the 2cal. When his peg was leaking at it's worse Steve said it smelt like the 2cal. So mentally everytime he smelt 2cal he thought of what he'd seen coming out of that hole in his stomach. Steve had a shocking time with that peg but overall we are really glad he had it. But we are just as glad to see it behind us too. One year peg free this coming thursday. Woohoo.

Swallowing wise he never had a problem which I am thankful for. All through treatment, even with peg feeds, he continued to eat icecream and drink apple juice every day. Possibly this helped. Good luck Sandy. I know some people do without a peg but personally from a carer's point of view it does make aspects of caring alot easier.

Thank you so much for the information. This is the stuff we most likely will never hear from the paid help. It sure is nice to know these things before a decision...and then later so we can anticipate what might happen.

My best wishes to all of you and the people you love.

Sandy