G'day everyone!

After very very intense reflection, reading all your helpful advices, talking to people, balancing all the pros and cons, and risks, David has come to a decision. He is determine to eat and swallow until the end and will not have the PEG tube inserted. He leaves his options open to reassess the situation if it gets out of hand. This is a good sign to me!!!!

David is a very determine men and if he's says that he is going to make it witout the PEG, nothing I say or do will change his mind. I so cross my fingers that he will be one of the lucky ones (as some of you were) and will not need the PEG. Again, he took this decision after careful thoughts, it has not been made lightly and ALL your responses have read and re-read and re-re-read.

Radiotherapy will start in 2 weeks so I am going to feed him like a little piggy for the remaining of that time and build up the carbs, proteines and other goodies. He can not afford to lose too much weight. We have made a committment to exercice everyday even if it's to walk just down our street and he has promised me to eat what I will give him. I will count all the calories he ingests and push the fluids up. I have wrote down all the drugs you have suggested and will talk to our RO and see what is available here in NZ.

Thank you so very much. I will keep you posted of David's progress and experience.
A sweet and special thank you to Karen and Joanna.

Ok I'm off to buy a homemade ice cream machine!!!

Marie-Lyne

Scott...many good vibes being sent your way for your CT results...we are rooting for you!

Marie-Lyne
Same to you and David..he is a lucky man to have you there to help and encourage him in this fight.
An ice cream machine...now why didn`t I think of that!

All the best to both of you.
Marica

Given that the PEG is a minor procedure, this surprises me, but I respect everyone's right to do what they think best. I fought the idea of a PEG, for reasons that are too stupid to admit to here. By week four and significant weight loss, not to mention the lack of proper nutrtional intake, the doctors took the decision out of my hands. By then i was behind the 8 ball as far as my body's needs, and I am not refering to weight....for all those who are advocates of the "cheescake en mass" route.

Remember as you fatten him up for the future, that weight is not a measurement of health. Feed him things that are nutritional, not just calorie dense. It's all about healing rates and the bodies ability to do so. Make no mistake this will tax its ability to do so.

Lastly, there is no reason that a homemade ice cream (or blender smoothie drink) could not be fortified with whey protein, and other nutrients. Fat isn't going to help him heal.

I'm three weeks out of radiation therapy and I couldn't have done it without my PEG.

I tried just drinking the nourishment at first, but by third week, throat sores and mucous were extremely difficult to overcome. I switched to the PEG for nourishment, but continued to take small sips of water and my medications by mouth (CoolWhip, suggested by RO nurse, helped meds slide down easier).

I have tried drinking a few cans with success in the last week, but it hurts my throat.

Pete

PS I'm not sure whether it may just be a form of denial to try to avoid using the PEG or it may just be the challenge of doing something that's within our capability and gives us a focus for the daily battle.

Hi - it is already 1AM and my husband is going in tomorrow to have a PEG inserted. Once again, I am realizing that we may not have the information we need. I have read the posts and know basically what to expect, however, was told it was a short procedure (15 mins.) and from that I assumed a short stay in outpatient. Is this accurate? Or should we count on a day long affair?
Michele

Michele,

I had my PEG and a port for chemo put in at the same time so the whole thing was a bit more involved for me and I ended up staying overnight in the hosptial for one night after the surgery. But I think that was in part because the doc who put in my PEG didn't want me eating anything (by mouth or PEG) for 12 hours after insertion (I guess to let the stomach heal a little) so I had IV nutrition while I was in the hospital overnight. I think the doc who inserted my PEG was way more cautious in the whole process than what I've read many other people went through here--which I don't mind since I've now had my PEG for 10 months and have had no problems with it (knock on wood) though I've had all sorts of other problems and unexpected infections, etc. in other parts of my body since then.

I guess you are probably headed off to have the procedure done about now. I hope it is short and painless for your husband!

Nelie

Barry was told not to eat anything but liquids or very mild, bland soft foods for 24 hours after recieving the PEG. In fact, he was feeling rather bad (in the stomach) -- lots of gas and some gastric reflux so he really didn't want much.The nurse and doctor at the section where they did the surgery went over the basic care of the surgical site and tube for the first 24 hours. We then went back to hospital the next day and our chemo nurse showed us how to flush the tube (which has to be done once a day, whether you use it or not) and clean the incision site. Barry was having bad reflux so they precribed Reglan (metoclompramide) which moves things through the stomach more quickly and that took care of the problem. However he lost about 4 pounds the first week after getting the PEG as he ate very little for several days right afterwards. He was also sore at the incision site and had difficulty getting into a comfortable sleeping position.

We used a large (surgical pad) gauze bandage and surgical tape to cover the PEG -- the tube was taped up against his abdomen and then covered with the pad as this prevented any "catching" of the dangling tube against clothing (or our dogs jumping up against it, ooof!). It was just important to make sure there was good air circulation. It healed fine and after about two weeks there was no more soreness.

Ironically, he was one of the few patients at Hopkins who never used his PEG, for some reason he was able to eat and drink all the way through treatment although the foods he could handle did become pretty limited. But it was good that he had it, many folks there told us it was a "lifesaver" for them...

Gail

Hi. I just realized I posted our PEG experience on the other forum instead of here. But basically, what I naively thought for some reason was going to be a half day or even 5-6 hour procedure turned into a five day hospital stay. We went Monday morning to get PEG tube. Jesse was severely nauseated/vomiting upon arriving; so they gave him fluids for a good while and than went ahead and put the tube in, but by next morning, CT scan showed it had "backed itself out." So we got another surgeon to put another tube in using a different technique and so far it has stayed in. But Jesse couldn't have anything in it for 24 hours to make sure it sealed, and by then, we had decided to have a port put in while he was still in the hospital, so he was only able to get the feeding started for about 8 hours before he had to fast again to prepare for the procedure this morning. So already 5 days in the hospital, but at least we have the PEG and a port in place and hopefully we can move forward from there. I will now pray that there are no problems with infection and am fighting the feeling that if it can go wrong, it will.

Should he secure it with tape to keep it from pulling out? Especially at night? Will it hurt the inside of his stomach if he lays on it? The home health nurse is supposed to come tomorrow, so I guess she will answer these questions, but hopefully nothing will go wrong tonight. The nurses at the hospital don't seem to have a lot of information, and the booklets don't give a lot of detail either, at least about practical things.

Thanks.
Michele

Michele, My John is on his 2nd peg[as well as 2nd surgery] Other than getting used to how to tape it so it's comfortable, and learning to sleep on the other side, he hasn't had much problem. It really is important to keep the skin area clean and the tube flushed with water, but that is easy to do. I have to remind John to keep a gauze pad between his peg and skin, so you might watch for that. Amy

Hi all, long time no talk!!

I thought that I would give you an update on my hubby's progress, my sweet David. To have a PEG or not was probably the 1st big decision we had to make. After all your helpful advise, information and intense reflexion, David had decided not to go ahead with it. It was not an easy and light decision as you know but I am happy and relieved to say that he went through the 7 week of RT without a PEG tube.

RT was complete at Easter and we are meeting the RT and ENT specialists for the 1st time tomorrow. Morphine has helped him immensly going through the process and he has been able to eat until the completion of the tx. He took heaps of Fortisips and lost 5kg during RT.

I know that the PEG tube is a saviour for a majority for people and David is one of the few lucky ones. I certainly would be the first one to recommend it but what I have leant from this is that "self-awareness" is an important factor that we can not disregard. David knew he could not go through the RT with the PEG tube. It meant so much more then a small surgical procedure to allow to nourish his body. The significance went beyond it.

David is a bit anxious about tomorrow's meeting. We still don't know if the RT has worked. We cross our fingers. Again thank you for all you help so far. I have been busy looking after our young children and sustain a certain normality in our household. I'll write again

Ciao,m