I had a peg & still lost 50 lbs. Probably because I hated the thing so much I wouldn't use it as much as I should have. I'm awnry & rebellious as hell! It wasn't that big a deal though & without it I probably would have lost a lot more weight. Everyones right, the last week or so & the next few weeks after radiation is tough to swallow much of anything. I did force myself to swallow everything I could stand all the way through treatment & my doc's think that has something to do with my fast recovery. I don't know. Maybe the old saying of use it or lose it applies here. I lost lots of lean muscle mass from inactivity & it has taken a few months of physical therapy to put it back on. Maybe forcing myself to swallow kept my throat muscles in shape a bit & sped recovery that way. We are all different.

Nasal tubes are for short term use. PEG's are for long term. The delivery of food either way is the same, but who the hell wants to walk around with a bunch of tubes hanging off your face for months....... PEG for anything longer than 10-14 days is the way to go. Simple, efficient, and completely concealable when you go out in public, which by the way, is part of getting well again, not hanging around the house. There is mental healing too and getting out in the world again is part of that process.

Had a nasal tube the first 24-48 hours after the partial glossectomy, ok for that but I couldn't imagine having one for several weeks. I was one of those that went without PEG tube, wound up in the hospital getting fed by IV for a week on about week 6 of RAD. Nasal tube might have been more handy at that time than having been feed by IV and getting all my veins torn up. The main source of pain was the radiaton to my tongue, even water hurt like heck. Throat hurt also, but that was livable as long as I stuck with soft food/soups.

One thing that came up talking to others that went without PEG and some that had Peg, is to remember to try and wean yourself off as soon as possible. Seen some people on it for several months probably longer than they needed to be.

Bob

Hi Delores,

I had the naso-gastric tube for 8 days after I had the total laryngectomy. It is simply a narrow plastic tube, about the size of the one the doctor uses when they scope us, and the insertion is the same. When not in use, you tuck extra tubing behind ear. It is trival to use, keeps the esaphagus in use since you need to swallow and not prone to any kind of infection since there is has been no surgery to insert. For short term use, I would recommend it.

I also did NOT have a PEG during radiation nor was one ever recommended. I lived on Ensure Plus only for several weeks and only lost 5 lbs, down from 123. Had I needed feeding asistance, my radiologist would have used the naso-gastric tube. Realize I was getting XRT and had had no surgery other than a neck dissection. I feel that not having a feeding device allowed me to return to eating much sooner than others who relied on a PEG.

Browse this board and you will find this discussion has come up many times before. The ones who had the PEG say, get one. They say it is no big deal, but the next thing I see on the board will be some one with it infected, or can't swallow, and some other non trivial problem. Those of us who didn't have one, say it can be done, but it is not easy. It will depend on how motivated your husband will be toward eating when everything tastes like chalk or worse or the only thing he can ingest is something like Ensure.

Personally, I would still opt for the naso-gastric tube if I needed feeding assistance for 3 weeks or less. I do not need another hole in my body that could become infected, especially when I am fighting cancer. That is one man's opinion and not the opinion of most on the board. Any yes I do know several people who were on the PEG for more than 6 months that had major swallowing problems. If he decides to go the PEG route, be certain that he also drinks lots of water orally to keep esaphagus working. It also helps flush the radiation out of the body. I had to drink ice cold bottled spring water, because tap water burned the tongue.

Take care,
Eileen

Take care,
Eileen

Sherry,

I think the majority of people who get the PEG have no problems with it and would readily recommend it to others. Some of them do have some swallowing difficulties, but most are able to overcome that and can swallow on their own after a certain amount of time is allowed for healing.

Then you have those in the minority, like my daughter, Heather. I think she must have had every problem possible with her PEG. She went through 3 different tubes, ending up with a J-tube, which has a double lumen and actually bypasses the stomach and goes directly into the jejunem. Eventually, even this didn't work and she ended up on IV feedings. Because of this, I am not a fan of the PEG. For many people though, they are a proven lifesaver.

Heather did have a naso-gastric tube after her initial surgery. It was in for about 2 weeks and she had no problems with it. Heather's case was extreme, though, and I would not suggest choosing one tube over another based on her experience alone. I do know however, that several people on this forum have had swallowing difficulties that were not resolved simply with time. The problems were due at least in part to the fact that they had PEGs. Many of them have had to have their esophagus stretched. I believe that some people have had to have this procedure done mainly because of radiation damage, but a PEG can definitely contribute to it.

While it is true that a tube hanging from one's nose is not a pretty picture, PEGs aren't pretty either when they don't work properly. A naso-gastric tube is very easy to use and is not nearly as invasive as a stomach tube.
What it all boils down to is that everyone is different. Unfortunately, there is no way to know in advance into which camp Ken will fall. It's not unreasonable for him to start without any feeding tubes and get one only if needed. You should ask his doctor how long it would take to get a tube once he decides he wants it. If he can be assured of getting one ASAP, Ken could try to go it alone in the beginning. If he may have to wait a week or more to get one, though, that may not be such a good idea. When he decides ne needs one, he will not want to be waiting. He will be needing it YESTERDAY! So make sure the doc is very clear on how long the wait will be.

Personally, if he was able to gain 10 lbs after his tonsillectomy, I would say he has at least a fair chance of getting through most of RAD without a tube. As Kirk said, tonsillectomy pain is nothing compared to radiation pain, BUT it's not exactly a walk in the park either. I just had a tonsillectomy a week ago and cannot even begin to imagine gaining any weight. I have already lost about 8 lbs and fully expect to lose more. The pain is darned near unbearable! If he could eat enough to actually GAIN weight, he should be able to get through the first part of RAD without too much trouble. If he doesn't need a tube until later, he may not mind the naso-gastric one because he may not need it for more than a few weeks.

Make sure that you ask his doctor everything about all the options. Only then will you be armed with the information you need to make a good decision. Good luck!

Rainbows & hugs,
Rosie

Thanks for all the replies. The different opinions on PEG versus naso-gastric gave me lots of "food" for thought. (Sorry, bad pun.) The doctor is going to start him out without any kind of tube and reevaluate weekly or even daily. If and when he needs one inserted, it will be done immediately. I suppose that is one of the advantages of being at Cleveland Clinic; when something needs done, it happens very quickly! I was amazed when we went for workups on Tuesday, and the doctor had the results of his blood test and chest x-rays when we saw him just 30 minutes later. That is probably the norm for large hospitals, but it was new to us. The thought of a naso-gastric tube had me apprehensive at first, but after reading your replies, I feel reassured that it will be doable, if necessary.

I want to make sure that the wrong message isn't being sent out. The vast majority of people with a PEG don't get infections and don't have swallowing problems. I have read of some people on here that have swallowing problems and they DID NOT have a PEG. I've read of some people on here that
Just trying to keep it balanced and not scare anyone away from what may be a needed PEG tube.
Minnie

Just one more pro-PEG voice. I had one for several months and my swallowing was never impaired, then or now. I lost a lot of weight and am very, very glad I had it because I was unable to eat by mouth for a couple of months (but could still swallow). For the record, I had no infection, no discomfort, it does not smell, and will not leak if one remembers to hold the end up high when it is open (that is the voice of experience). In summary, I never plan to go through such treatment agan but if I do, I will be first in line for a PEG.

Sherry,
One additional thought. I had the PEG inserted at the end of week 4 of my treatment. I wished I had the procedure right at the beginning. Once the effects of radiation start to accumulate, the difficulty in swallowing that results tends to leave one more dehydrated and under-nourished than otherwise. For me, this made the installation of the PEG more difficult and painful than it needed to be.
Good luck and best wishes for Ken's treatment.
Sheldon

Hi all,
I probably should let this subject die a natural death, but it has been bothering me for a couple days now and I feel the need to reply to minniea's last post. Sherry and Ken, I will apologize in advance if I cause you any distress over this. That is not my intention.

Minnie,
You seemed concerned that the wrong message was being sent, that Ken may be scared away from using a PEG, yet the majority of you fully and wholeheartedly supported the idea of a PEG over the naso-gastric. 2 posters did state that their doctors (in 2 non-US countries) routinely recommended naso-gastric instead of PEGs. They both stated, however that they personally had used neither tube and they weren't endorsing either type. Bob had experience with a naso-gastric tube and said it was okay for a short time, but he couldn't imagine having one for long term use.

Eileen and I were the only ones besides Bob who actually had any experience with a naso-gastric tube, and neither of us categorically stated that PEGs were "bad" and naso-gastrics were "good". And we definitely were not suggesting that Ken should not use any tube at all. I did feel he could get by without one for awhile, if the thought of getting a naso really bothered him, but I did not say he should totally do without a feeding tube. And although Eileen did state that she would choose a naso again instead of a PEG, she also stated that she would do so if needed for 3 weeks or less. I assume that means that for long term use, she would consider a PEG.

Anyone who takes the time to fully read my posts will see that I almost always state that Heather's case was more severe than most and I never recommend making a decision based solely on her experience. I try to be very careful and use words like usually, probably and maybe a lot. I never state that my opinion is the best nor do I categorically recommend one thing to the exclusion of all else. In this case, I was simply trying to answer the original question ........... Has anyone had experience with the naso tube versus the PEG tube and any insights as to how easy or difficult it is to use?

I think in your zeal to promote the PEG, some of you lost sight of the original issue. Ken's oncologist at a major hospital was recommending a naso-gastric as opposed to a PEG. Sherry wanted to know what our experience had been with the naso tube. Was this as bad as she and Ken imagined? Did anyone's experience bear out what the doctor was saying? You said you had never heard of a Naso-Gastric being suggested over a PEG. Neither had I. You also stated If the PEG were such a risk I don't believe the top doctors in the country would be using them. I agree, but no one was saying they were such a risk. The question had more to do with whether or not the naso-gastric was a poor choice compared to the PEG, specifically was it harder to use?

I try not to get bent out of shape too often, but every now and again, there is a post here that touches a nerve. I know that most cancer patients' journeys do not parallel Heather's. Most of you, THANK YOUR LUCKY STARS!, do not have to endure what she did. I know the extreme anguish she suffered sometimes colors my views, but also because of it, I feel I have a unique perspective to offer. I don't post often anymore, because, quite frankly, there are few questions to which I feel I have a better or different answer. The rest of you do an excellent job of answering questions about all sorts of issues. I usually only post if I feel I have something different and of value to say. Sometimes the replies, although excellent, are a little one-sided. Minnie, I believe you wanted to be sure the post was kept balanced. That is exactly what I was trying to do. One-sided and balanced are not even in the same ballpark, let alone the same thing. Since I did have some experience with a naso-gastric tube and also since Heather's experience with a PEG was different than most, I felt by presenting this side of the issue, I was bringing balance to the post. Sorry for ranting, but like I said, for some reason, this post touched a nerve and I had to get this out of my system.

Rosie