Feeding tube question - Oral Cancer Support

During my husband's pre-treatment workups, our hematology oncologist mentioned that 75-80 percent of his patients require a feeding tube after 4-5 weeks, and that his preferred method is a naso-gastric tube. He feels it keeps the esophagus open and has better results than a PEG. Of course, this bothered my husband, although, personally, I don't care if he has tubes in every orifice if it facilitates his recovery. 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? Ken feels that he will be able to get by without one since after his tonsillectomy, despite considerable pain, he was able to gain ten pounds in three weeks in preparation for the upcoming treatment. I'm not so sure, so would like any advice anyone can offer. Thanks everyone, this board is so helpful!

hi Sherry,

i had a peg for reasons that your doc is talking about. it was worth it's weight in gold. i spent one night in the hospital when it was inserted. it came out easily about 18 months later... my weight remained almost unchanged.

i've only heard of the naso being used in cases that were quite severe... and i don't recall anyone speaking well of them. i would avoid it if at all possible.

hopefully someone will have a different view of the naso.

best wishes for your husband.

cu,
larryb

Sherry, welcome. I had a peg and still lost 50 pounds during treatment. I recommend them highly and feel they should be installed as a normal part of treatment. At the end of rad, I couldn't even talk or swallow my own saliva, so a peg was the only way I made it through. Urge your husband to get the feeding tube. I don't know about a naso tube. Does that mean it is inserted through the nose? I don't know but I do know that after my tonsilectomy, which I thought was the worst thing to happen to me ever, was nothing in comparison to radiation treatment. The last week and the first few weeks after treatment ended are the worst. Without the peg I would have shriveled up and blown away. We are all different, but I highly recommend pegs during this treatment. Insertion and removal are very simple, so I would urge Ken to get it done. Will pray for guidance for you both.

Sherry,

I had a PEG and I probably would again. To be honest, I can't even imagine how uncomfortable a naso-gastric tube would be. I would strongly suggest you have your dotor stick that horrible thing in his nose and see how much he prefers it then.

Not to muddy the water too bad but I read a study (can't remember which voume of ANNALS it was in) about more issues with the naso-gastric versus the PEG. Besides, who wants to walk around with a tube hanging out of their nose for a few weeks/months?

Ed

Sherry,
I will make a very bold statement here.....GET THE PEG TUBE. It certainly is possible to get through radiation without one, many on this board have. My question, though, has always been "why put yourself through that?" I equate it to any woman now a days going through childbirth "natural" when there are epidurals to make it a painless experience.
Radiation kicks butt, it is THE most difficult part of treatment.
I have never heard of a Naso-Gastric being suggested over a PEG.
Good luck with it,
Minnie

The doctor said he has had patients with PEG tubes who have had their esophagus completely close up and are unable to ever swallow again. Anyone hear of this? This was his reasoning for naso-gastric instead of PEG tubes. I will certainly discuss this with him when the time arises. He is a very well-regarded doctor at Cleveland Clinic; however, I have no problem arguing with God himself when it comes to my husband.

Sherry, in the hospital where I got treatment, only about 25% of the Head & Neck patients are given feeding tube during their treatment. It is more common to use naso-gastric tube than the PEG one because the doctors think that it is easier to operate and has less complications. I was threatened to have one inserted when I could not swallow food. The idea of getting the tube into my nose scared me to death and I refused to have one on. I don't know if I would have agreed to having a PEG tube if I had been offered one. Anyway, I survived the whole treatment without a feeding tube and lost 16 lbs. I consider myself very lucky and everyone's experience is different. But here in Hong Kong, doctors will not suggest inserting any feeding tube at the beginning of the treatment unless there is an absolute need and that explains why majority of the patients do not have one. By the way my stage of tonsil cancer is very similar to your husband's (T2N3M0).

Karen.

Sherry,
My husband had a PEG for about 6 months. About three weeks into chemo/rad treatment, he stopped eating overnite...thank God the PEG was in and ready. He couldn't eat for about 5 months and never would have made it w/o the PEG. A naso-gastric was never mentioned by any docs to us.
God bless,
Debbie

I fail to understand how a small nasogastric tube carrying food to the stomach will have much effect on the esophogus?? I had a PEG and ate NOTHING by mouth after the 4th week of radition until at least a month after treatment. But I did drink water all day long to keep my swallowing strong and to keep hydrated. I'm a strong woman but I cringe at the thought of enduring radiation and the months after without a PEG. The tube caused me no issues. I kept it tucked into the waist of my pants and forgot about it unless I was "eating". My tube was put in during my surgery, a full 6 weeks before radiation started.
I could not imagine having a tube in my nose for more then a few days.
If the PEG were such a risk I don't believe the top doctors in the country would be using them.
Minnie

Hi Sherry

I got through without a feeding tube but I didn't have chemo-related nausea to deal with.

My radiation oncologist also suggested the nasogastric tube, rather than the peg. Best wishes to you and your husband on your journey.

Love from Helen

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

One more little note, because I don't think I recall seeing this particular issue being discussed before. If you get a PEG and then decide it is not right for you, you CANNOT get rid of it right away. We were told it takes about 6 weeks for the stomach wall to heal. If a PEG is pulled out before this healing is complete, the stomach would collapse. So, like it or not, you are stuck with it for at least that long. You don't have to use it. You just won't be able to get rid of it for awhile.

If you decide you don't like the naso-gastric tube, I believe it is no big deal to pull it out. Since no surgery is needed to insert it, there is no healing time needed before it can be removed. The worst that can happen is probably a sore nose and throat for a few days.

Again, I am not saying that a naso is preferable to a PEG most of the time. I am just saying it is a viable alternative. The main drawback is its less-than-appealing appearance. And I don't personally feel that cosmetics should play much of a role when making this decision.

Rosie

Rosie,
My post was not meant to offend. I'm sorry if it did. I felt like negative statements were being made about the PEG. I just wanted to keep some balance. I reread my post because I am very good at seeing my own mistakes but I just don't see how my post offended anyone. Again though, I am very sorry if it did.
Rosie, my post was made more because of Eileens post (sorry Eileen!), as I felt like she was stressing the infection/throat closing issues. But, she was simply stating her opinion, as was I.
My zeal for the PEG is from experience with it. I haven't had a nasogastric. We both are trying to help others which is what this board is for. I wasn't lashing out at anyone and I'm sorry if it appeared that way. I come on here for what the board can give me and what I can give the board. I don't come on here to debate nor to argue. For the first time I feel uncomfortable being here and that makes me sad.
Minnie

My mom never had a PEG tube but she did have the nasogastric tube for 8 days while she was in the hospital with the first surgery. She hated it. When the food went in it burned her like crazy and she made her doctor promise on the second surgery that he would not use the feeding tube again and he didn't. She had a trache and lost 3/4 of her tongue and a large portion of her mouth but the thing she hated most was that feeding tube in her nose. He never once mentioned using a PEG and my mom lost about 40 pounds and now 8 months post radiation has not gained a pound back. She lost a lot muscle and has a lot of loose skin and she looks like a completely different person than before radiation. I think they should have given her the PEG tube as a lot of days she never ate anything and I feel that because of the poor nutrition she took longer to heal than most....

Love ya Minnie....don't feel uncomfortable...your wonderful!!!!!!!!!!!

Dani

Hi All,
Well my peg came out last week, was in place for eight weeks, no problems. My problem was from long periods of feeding, I only stopped throwing everything back after they stopped the pump and syringe fed me every few hours, similar to meal times, then I was fine, I was totally nil by mouth for nearly four weeks, so for me to use the peg myself for meds, water and food suppliments was fine..
Sunshine... love and hugs
Helen

Minnie,

I don't like to use this forum for arguments or debates either, which was exactly why I resisted my initial urge to respond. As you can see, it was 2 days before I gave in and posted a reply. I should have been smart and done what some others did, put my thoughts in a private message instead of airing them on the forum. I'm sorry that I didn't choose to do so.

I think what I objected to in your post was your desire to "bring balance" to the issue.. I felt that we, as a group, had already done that. There were several opinions in favor of the PEG tube, a couple neutral and a couple, under certain conditions, in favor of the naso-gastric. That seemed to me to be pretty well-balanced. It also seemed to address Sherry's question rather thoroughly. I just didn't see how everyone touting the use of a PEG above all else and totally disregarding the potential value of a naso tube was bringing any kind of balance to the issue.

Don't forget, Sherry asked this question because Ken's oncologist had recommended a naso-gastric tube. Obviously, if this oncologist prefers a naso-gastric over a PEG and if it is routine in some countries to recommend a naso-gastric over a PEG, there has to be some merit to them. I readily concede that in the majority of cases, getting a PEG is the best decision one could make. They normally do work well, do not get infected and do not cause swallowing issues. But the fact is that some people do have problems with them. A PEG is not always, unequivocably, without a doubt, the best thing since sliced bread! And believe me, you do not want to be one of the people in that tiny minority who have a bad experience with one.

You have trouble understanding what I felt was offensive about your post. I have trouble understanding why some people can't concede the fact that sometimes a PEG isn't the best choice. And, just for the record, I didn't think your post was offensive. It just needed a balancing view. Whew, all this balancing.........you'd think we were all gymnasts! Also on a lighter note, I loved your "food" for thought pun, Sherry!

Minnie, before Brian comes down on me for causing discord on the boards and locks this thread, let me say my response to your post was too heated and I do apologize for that. And I am sorry for making you feel uncomfortable. But I stand by my assertion that sometimes, just sometimes, a naso-gastric tube is preferable to a PEG. One must get all the facts, discuss the pros and cons with their doctor, take a deep breath and choose. Then get on with their treatment and kick this cancer beast in the butt!

Take care all,

Rosie

OK...now I have to tell my nasogastric story. When I was 13 (back in 1969

), my father was a pharmacist at the Air Force base we were stationed at in Wichita, Kansas (where I was born, too). At the kickoff of Poison Prevention Week, I was put on a gurney and they "simulated" pumping my stomach from ingesting poison. They took the tube and started inserting it in my nose, snapped a photo and put it in the base newspaper. I was a hero amongst the kids. Sad though, I have had a fear of tubes put in my nose since. Just the thought of it when it was mentioned in the first post on this thread had me reaching for my "second belly button" with pride!

Best wishes for Ken to choose whatever he feels is best to get through his treatment.

Ed

Rosie,
You are the only one that has said a thing to me about my post, private or on the forum. I spent alot of time thinking about this today and would like to simply bow out of the conversation. It isn't productive and I avoid conflict in my life at all costs unless it is a conflict that will have some type of positive outcome. Again, I didn't set out to offend you and apologize that my post had such an effect on you.
Minnie

Minnie,

The private message I referred to was sent to me, voicing approval for my post. The person didn't want to add to the discord, so didn't post it publicly. I guess I have not done a good job of explaining myself. My last post seems to have made things worse, so let me clarify:

Minnie, Your post did not "offend" me. And I'm sorry I upset you.

Sherry and Ken, I apologize for hijacking and ruining your post. Please don't let this episode of my bad judgement affect your participation on the forum.

Ed, I am trying to picture you lying on that gurney with a tube stuck in your nose. And at age 13, no less. I'm not sure "hero" would be what my 13 yr old friends would have been thinking! Just too funny! Thanks for trying to inject a lighter note.

Brian, I'm sorry I screwed up. I'm bowing out now, too. It might be wise to lock this thread.

Rosie

Wow, what a lot of responses I generated with my original question! Believe it or not, the responses have all been very helpful and informative. So, please, don't "lock the thread", whatever that means, because anything else anyone can post just may be helpful, also.

Delores,I hope you make the right decision for your husband. There are so many things to think about for treatment and it all seems so frightening. This board is such a source of information and all of us are here to help.
Ed, I agree with Rosie..........what a sight that must have been!
Minnie

Jeez guys, given some of the heated exchanges I've had with people on this board when touchy subjects like religion etc. come up, this thread isn't even warm. There is good information here, and everyone seems to be genuinely concerned with not offending other people...to me that's the way these things get handled. No one has behaved like they have a thin skin, and no one has actually flamed another...... I think all the posts here have merit. For the record, in most comprehensive cancer centers, getting or not getting a PEG is not a patient's choice. You loose 15% of your body weight during treatment and you get one, period. They provide the nutrients necessary, and the complication rate as a figure of overall procedures done is minimal. Even long term PEG users like myself still take some nutrition, and obviously water by mouth. Swallowing issues are not a result of the PEG, they come from different people's response to the effects of radiation, and the amount of scar tissue and nerve damage it causes related to the smooth muscles of the throat, the ability of the esophagus to do its peristaltic wave thing, and more. PEG or no PEG those that are going to have swallowing problems, are going to have them. Some posters here in the past have stated that they thought that the fact that they didn't get the PEG kept them from getting swallowing issues...most of the docs I have talked with would disagree with this. Everyone knows I am a big PEG proponent so my bias on this board in favor of it is well registered.

I agree with everything that Rosie has stated. The question was, has anyone had any experience with the gastro-nasal tube? I did, so answered it.
I did NOT have this tube during radiation. I went through radiation with NO feeding assistance of any kind wwith little loss of weight. Very few of us on the board have done this and I'm not recommending that your husband try this unless his doctor thinks he can. My radiologist uses the Peg as last resort, but they monitor your weight daily so as soon as you start losing, they come up with higher protein drinks. If that doesn't work, you get either PEG or nasal tube. Swallowing the stuff isn't easy and it took everything I had to get down the 4 cans I needed to maintain my weight. He probably would have to drink 6 or 8.

After the first couple of weeks and for several after, he will probably only be able to swallow high protein drinks and water, no food at all. I suggest you find Mark's high protein shake on this board and mix some up now to see if he thinks can live on nothing but this and Ensure Plus or equivalent via mouth for several weeks. What is your husband's opinion in all of this? He and his doctor are the one's that need to make the decision.

Let's put this thread to bed.

Take care,
Eileen

My doctors put my PEG in during my original surgery, they didn't ask if I wanted it, there was no question about it. I begged them to take it out a few weeks after my surgery as I was eating just fine and had no idea what radiation was going to be like. I have thanked them more then a few times for telling me NO, it stays until radiation is over. It made the treatment process easier and I did not have to worry about nutrition.
I could honestly say that if I couldn't have a PEG tube then I would go for the naso tube. Just as long as I had some type of tube to provide nutrition. If I had never had a tube during radiation then I would be on here saying that it's not needed. I think that is why the subject is touchy, as we are all simply stating what we know and it's human nature to dislike anyone disagreeing with us!
Dolores, I hope that we have helped you with this rather then made it more difficult.
Minnie

It is not human nature to dislike someone that does not agree with you, it is childish. Also, I think we who have not had a PEG are smart enough to know that going without one is not for everyone. Please end this!

I can't win here. I didn't mean we dislike the person disagreeing with us. I meant we dislike having someone disagree with us. I was trying to lighten it all up, to recognize the fact that we are supporting what we know and have experienced. I clearly said if I had not had a tube I would most likely be on here voting for NO tube.
There's not a childish bone in my body........if there is I sure wish they would make themselves known so I could feel 10 again.
Sorry you misunderstood my post.
Minnie

Minnie
Stop worrying I KNOW WHAT YOU MEAN, and I'm sure everyone else does as well, if we weren't all in this mess together there would be no forum.. We transgress, age, sex, race, culture to support each other, within any FAMILY there will be differing opions, does it matter, NOPE...
love you all anyway...
Sunshine...love and hugs
Helen

Helen,
Well said! I agree 100%

GRE1,
I had my touchy day when I started this whole debacle a few days ago. Perhaps you are having one today, Glenn? I can see why you interpreted her words as you did, but I don't think Minnie meant it that way. I misinterpreted her earlier post which was what got this whole thing started.

Minnie,
I'm pretty sure I understand what you meant. And thank you for "extending the olive branch". Glenn is right on one count. We need to end this, but not because of what you said. It just doesn't pay to flog a dead horse and that seems to be all we are doing now.

Sherry & Ken,
I am so, so, so sorry about this mess. I do hope you have been able to glean enough facts to be able to help you decide. It does sound like you are starting out right by going day-to-day and monitoring the situation closely. By the way, today was Ken's first treatment, wasn't it? How did it go? Perhaps instead of answering here, you might want to start a new thread!?!

Brian,
Perhaps you should have locked the thread. We just can't seem to get this right!
Perhaps it is time to do as Eileen and Glenn suggested and put this thread to bed! We can all just agree to disagree!

Now I will be waiting for the other shoe to drop and someone to jump down my throat,

Rosie

Hello Rosie,

After reading all the responces to this thread I wanted to share with you how I feel about it.
One of the things that make us human is to be able to disagree without losing that bond we all share.
I don't think there's a member of this forum who doesn't love you. You post when you feel the need. Your posts are always informative and I and many others value your input. Meeting you was one of the highlights of the reunion for me.

Your Friend, Danny Boy

Hello Minnie,

I understand what you were trying to get across. In no way did I find anything in your post offinsive. I consider you a valueable member of this forum and would hate the thought of you not posting due to a misunderstanding. I'm sure Rosie agrees with me. You both contribute so much to this forum.

Did you receive the album? I sent it out over a week ago. Hope it didn't get lost in the mail.

Looking forward to the day we meet and keep those posting coming.

Love ya, Danny Boy

This PEG tube stuff always brings out all kinds of emotional response - more so than any other topic (except religion). I didn't get one and defied my RO, AMA. Rummage around in the archives and you will find the same discussions. Maybe some folks are short about this because of that very reason. I have to admit that there haven't been many discussions of the nasal feeding tube option so that has been an education for many of us.

I paid a price for my decision - lost 60 lbs, inhibited the healing process, etc. Would I do it again, go PEGless that is, probably, but I couldn't in good conscience advocate that path for everybody. It certainly isn't a path for the faint of heart or those in which extreme pain is an issue. Did it help my future swallowing prospects? I use to think it did but now I am not so sure. The swallowing issue is a complex one subject to many factors and unknowns. Surgery, pectoral flaps, radiation, etc. all play different roles.

Some folks here very life has depended on the PEG. The bottom line is that we all respond differently to treatment so everyone's opinions are of value. It does cause me a little pain to see it getting personal, or rather that some opinions are percieved in a personal manner. We are all survivors here and each of us bring a unique piece of the puzzle to the table. This is NOT directed to anyone in particular, just a general passing comment.

Minnie,

I am sorry if I read your post the wrong way. I still bvelieve this post has gotten out of hand. Again, sorry.

And Rosie, I wrote that in the waiting room at MSKCC. Talk about a touchy day, my doctor was 2 hours behind!

Glenn

Rosie and all else involved in our OCF drama thread:
Each and every one of you are an important part of my life. One of the first things I do in the morning is come to this site, to read messages from my friends. I end my day reading the messages. I have not met even one of you but consider you all my friends. With friendships come the little speedbumps that make the relationship interesting and worth being a part of. This is nothing more then a speedbump. I am a natural at letting things go, quickly, and this one is gone for me. I can only hope that any words I clumsily typed did not cause any long term damage to any of my relationships on this board.
Rosie, I cannot tell you how much respect I have for you. When I received Danny's book a few days ago with all the pictures my daughter and I both said how you looked JUST like we had thought you would.......very warm, happy and loving. Heathers story was the first one on this board that tore at my heart when I first became a member. I showed her picture to all my older daughters, telling them about her. As a fellow mother I admired the courage you showed taking care of her and still coming on this board after her battle was over. I am not sure I could have done the same.
So, I hope this will all end with none of us feeling like we need to tip toe with our posts and hold back how we feel.
I promise to try to express what I mean better in the future and to not be so narrow minded about the silly peg tube.
Love,
Minnie

Glenn,

You are right. The post had gotten way out of hand. It did seem like we were getting back on track though, and I was hoping we could stay there. But after a 2 hr wait, I think perhaps you are entitled to a touchy post or two! Hope the appointment went well once you finally got in. Are you still doing chemo? Hope it is going well for you. Take care,

Minnie,

I agree. We need to put this behind us. I obviously totally misinterpreted your meaning. And possibly you did the same with mine? Anyway, there are no hard feelings. As far as I am concerned, things are back to normal.

As to me continuing to come to the forum, believe me when I say I have tried to stay away. Sometimes the stories here bring me so much pain I don't know how to bear it. But, as many as you have said, we are family! Coming here was what kept me sane during Heather's ordeal and every time I try to stay away, I find myself being drawn back. I think, in a way, it is also a crutch for me. As long as I keep OCF a big part of my life, I can put off getting back to the rest of my life. I have finally admitted to needing help and recently went on an anti-depressant. I was one of those who could see the merit of other people taking them, but always figured I didn't need them myself. Wrong!!! I do need them and now that I have admitted it, maybe I will finally be able to move on with my life. I don't think I will ever stop coming here completely, though. It truly would be like leaving family and, truth be told, I am closer to some of you than I am to my own siblings. Well, enough of the maudlin stuff. I'm headed to bed. Goodnight all!

Rosie

So...tell me what you really think about the PEG tube!!

Just kidding, please don't hit me.

On another note, did anyone other than me have the "button"? It was designed for people that wanted to maintain and active lifestyle in spite of the need for a PEG. It extended about an inch or two and had a one-way valve that prevented any leaking. It came with two tubes, a thicker one and a smaller diameter one. One was for feeding and meds via syringe and the other for a feeding pump. It was put in at the doctor's office in 5 minutes or less. It was so cute that I still miss it, sometimes. NOT!

I am certainly one unique dude...I was a poster child for the nasogastric, had a PEG and a button!

Love you all!

Ed

How the Heck did I miss out on this one!??? Two whole pages of "diss-cussion" and not one word from me?

I must have been in a vacuum or something!

For the record: I get the last word

:p

Been wondering why you haven't posted much lately Mark. Hope it's because your working long and productive hours. Alot of the questions posted don't fall into my experience with oral cancer. I like Minnie read the postin's daily to keep up with all my friends and to make new ones. Think about the growth of this website in just 1-1/2 years. In late July of 03 I was member number 853 and now there are over 1700 members. All of us have had a small part in acheiving this. We all know Brian is the main man
on this website. I wanted to Thank You Brian for everything you do for us.
I think I got the last word in on this one Mark!!!

Brian, Could you send this thread to the recycle bin in a day or two?

Love Ya All, Danny Boy

Before you send this to the recycle bin, perhaps a quick update is in order. Ken was hospitalized with an infection last week and was unable to drink anything for several days, so a tube of some sort became necessary. The doctors put in an NG tube; he threw it up. Several tries (and several regurgitations later) they gave up and installed a peg tube. So far, it is working great! And actually, it seems much more unobtrusive than the NG tube, is very easy to use, no infections have popped up with it, and most importantly, he is putting on weight. So lucky Ken, he got to try both methods! 6 more rads to go, then he is through with treatment!

Sherry, glad to hear Ken found a solution for his eating issue. I am very supportive of the peg as mine worked out well for me. The last rad treatments are the hardest, so look forward to the end of treatment. The effects will last beyond the end of treatment, so anticipate 4-5 weeks of further discomfort until things start getting better. You both are still in my prayers.

Hi Delores,
I'm glad that the situation worked out for Ken and hope the end of radiation comes quick!
Take care,
Minnie