Good afternoon everyone.

My name is Colleen and my brother was diagnosed with SCC, with involvement in the lymph nodes and we recently found out that it has spread to his lungs, although they say what they found in the lungs is "microscopic".

He had a rather large tumor in the upper right quadrant of his mouth. The skin of his cheek is involved, as well as the roof of his mouth, the sinus and some of his cheekbone. A 10 hour surgery had been planned but then was scrapped at the last minute because the tumor was so large. So he began aggressive chemotherapy.

He's had one round already, and is due to go back for another round in about 2 1/2 weeks. The first round was pretty impressive as it reduced the mouth tumor in size by about half.

I do not know what stage, but my guess is 4. We are trying madly to get second opinions, but because he has already begun chemo no one will see him until he is at a "decision point" which should be after the second round of chemo.

My family and I are all terrified. He is only 55. He was a heavy smoker/drinker - and unfortunately had been using SKOALs for the last few years (since he had a double hip replacement).

Right now just looking for advice on getting some nutrition in him. He's become very thin and I want him to be able to have something to fight with!

Thank you everyone.

Colleen

Hi Colleen,

I am sorry you have to be here, but be assured we will help you in any way that we can. Please keep posting your questions and concerns.

From your first post you did not mention anything about a peg tube for feeding. Does your brother have a peg tube? Can he take any food by mouth? Have you discussed with any of the doctors about his feeding or getting a peg tube?

One form of high calorie and nutrition is a drink called Carnation Instant Breakfast Drink VHC (Very High Calorie) - 560 calories per can. During my treatment I was required to take in at least 2,700 calories a day (at least 5 cans but I did 6 cans per day). My nutritionist that was part of my team ordered these for me and charged it to my insurance. I started out drinking these but eventually had to use my peg tube as I could not swallow. If you do not have a nutritionist as part of your team, talk to your doctors about seeing one. Getting enough calories and nutrition is VERY important to the healing and recovery process.

Over the next few days you should be receiving some valuable information from a lot of caring people in this forum.

Hi Tom.

Thanks for responding so quickly. He does NOT have a PEG tube. The doctor did talk about him getting one - eventually - but he is still able to eat by mouth - well - swallow liquids and soft foods like yogurt and pudding. He says he is Ensured to death, and so doesn't want any more of that.

I have been making soft foods for him that are high in calories (banana pudding and this crab/artichoke dip where I'm pureeing all the ingredients first), and he was able to get some won-ton soup and a bit of an egg roll in him yesterday. Do they sell the Carnation stuff at regular stores - or is it special order?

I'm also worried about second opinions and whether he is being treated at a CCC facility. His chemo happens at Long Island Jewish Medical Center in Manhasset, Long Island.

I am at somewhat of a disability here because his main caregiver is his wife, and sometimes she just is not forthcoming with information. When I ask questions she says, "The doctors have their reasons". That may be good enough for her but not for me or the rest of my family, and he sometimes is too shell-shocked to remember things from his appointments. It's so frustrating!

Hi Colleen,

My brother had a large tumor on his tongue that was diagnosed last year. He had aggressive chemo and radiation. Like your brother, the tumor shrank pretty quickly after about 2 weeks of chemo. The chemo and the radiation were very hard on him, but he is doing pretty well now.

My brother is married, but my mom ended up being his primary caregiver. She ended up getting REALLY mad at me because I asked her a lot of questions and brought up a lot of issues with her (about my brother's treatments). She told me that I was being "too cold and clinical".

It seems like you are having the same kind of feelings that I did - scared, confused and sort of mad at the caregiver and patient because they aren't getting enough information. You're right; it is frustrating. Unfortunately, there is no easy way to fix this. You will have to figure out some way to communicate with both of them. For me, the best thing to do was to email questions to my mom and not talk with my brother at all about his treatment (we talked about happier things!). Your best solution might be something else ... it is not an easy position to be in, but your main focus now should be making things easier for both of them.

I hope that this doesn't sound too preachy because I certainly don't mean it to be.

Jean

Thanks Jean.

I am frustrated and scared, not really angry. I mean sis-in-law means well, but I need details and she gives me few. Brother is the oldest of us five kids, I'm the youngest. Mom and Dad have passed, and the other three live in Georgia (we're in NY). So this time the family side of caretaking is all on me, and I have to give the other siblings answers.

You don't sound preachy at all.

I suspect at some point I may become the primary caregiver, because her reaction when we found out about the spread to the lungs was to be paralyzed into inaction and stunned silence. It may just be too hard on her to do it effectively. We'll see, time will tell and I will do what I have to do.

Thanks Jean, for the words of wisdom. It helps a lot to know you're not the only one to have been in the situation.

Colleen

The carnation is a special order and my INS like Tom's pays for it and UPS delivers it. It's hard for me to down 5 cans like the Dr wants, but I try. Good luck to your brother and I hope every thing goes well for him.

You can also get the VHC from your local Walgreens or CVS without a prescription even though you have to order it thru their pharmacy dept. I would save the VHC until its hard to swallow or nausea is a problem. You didn't mention, I don't recall, why he is getting thin?

I order my Carnation IB VHC from a web site called www.imed.com. They have variations in calories - 250, 375, or 560. The 560 calorie one costs about $27 per case of 24 cans plus around $8 shipping. So living in Ohio I get it for around $35 a case of 24. I can eat just about anything now, but I still order it and drink a can for lunch because of the great nutritional value. They deliver it right to my door.

As far as getting to know more about what is going on with your brother, are you able to go to his doctors appointments with him and his wife? Can you offer to drive them to the appointments? In my case I was seeing a doctor once a week during my chemo/radiation treatments. I am not sure if you are being made aware of it, but he is probably seeing a doctor quite often.

A good place to get a lot of valuable information from this forum is to go into the "Getting through it project" forum, click on the subject "Draft Copy", and then click on "GTI draft copy" link that is in the first posting. A document will open up. There is a table of contents at the beginning.

If the doctors are leaning towards giving him a peg tube, it is better to have it done before radiation treatment than during it. That is great that he is still eating solid foods.

Thanks everyone for the good information on the Carnation and where and how to order. I'm guessing we may not need it for a while - I had them both over for dinner last night and the man ate nearly an entire London Broil by himself! Whoo Hoo!!!! Along with mashed potatoes and some peas and corn!

This is a great thing because since his release from the hospital last week, he had only ginger ale and gatorade, and the weight seemed to just be melting off of him. Now I feel like I've whetted his appetite again.

Thanks for the advice about not doing the PEG tube during radiation. He may have radation, and he may not - docs will tell us what they want to do after chemo round 2 and new scans. I am not able to go to appointments with him because I have to work weekdays and he rarely has appointments on the weekends or in the evenings - but I do know that he's been back to the doctor several times since chemo round 1 ended.

I'm going to be on this board quite a bit - educating myself. Thanks everyone for the great support.

Colleen

Colleen,

If you get to the point to where you are considering the Peg, post again as there are many of us that didn't have a Peg and I for one wouldn't get one if I had to do it over again.

There clearly are people that got through treatments without a PEG. Some think is was because of something they personally did. I don't agree with that assessment having watched hundreds of patients go through the process. The truth of the matter is that each individual is affected differently by the treatments. The swallowing issues that develop in some people and not in others are more a function of the type of radiation, the pathways it takes, the structures it hits, the levels of it, and the number of treatments, not to mention the person's own physiology.

Given the benign nature of getting a PEG when you consider the downside of not getting one until the weight loss (and the accompanying nutritional deficiencies have already begun to compromise healing and well being), it is just are not worth the compromises. Your doctors are going to be the best judges of if you need it or not. But if more than 10-15% body weight is lost, and they haven't intervened, you need to step up for a serious discussion of it all with them. This usually isn't an issue a a big multidisciplinary institution. When you start loosing weight you are also loosing nutritional health. There is a point in which the decision to get one or not is often taken out of your hands. Just because you have one does not mean that you cannot continue to eat by mouth as possible. In many people it is the combined methods that allow the appropriate caloric intake.

I for one cannot believe that it has been posted here - after you have said that he is getting thin (this is not a good sign) and that he is only drinking carbonated beverages right now, that anyone would think that he is getting enough food/nutrition, and that he should avoid a PEG. That borders on illogical bad advice to me. If he gets weak from an immune perspective from poor nutrition, he is going to have longer healing, more complications like infections and other opportunistic problems, that with a stronger immune system from proper eating he wouldn't have to deal with.

It goes without saying that most of us have a psychological barrier to getting one, and you can put me at the front of that list. But in the end it likely made the difference to me in the duration of my recovery, and the amount of lean body mass that I lost.... which even with it, was startling.

I didn't want one at first but I gave in and listened to my Dr and wife. I hardly used it, but I sure was glad I had it when I needed some nutrition. And it made my wife comfortable knowing that she could feed me if she had to. If I had to do it all over again I would definately have a the PEG.

Tim

My husband and his doc felt that he wouldn't need one because of his radiation field. Starting week 5 the decline began. In about 15 days he has lost 15 pounds, become dehydrated and his counts were too low for chemo last week. 3 weeks ago he was doing GREAT; 2 weeks ago pretty good... It just hits - BAM. His RO was very discouraged and I can't remember who said PEG first, me or him. But needless to say we got one - no choice in my mind. But it was not easy (it happened today). Anyway the point of this "ramble" is it is alot harder on a body in a weakened state - it would have been easier to get it to begin with.

I think it is a personal decision and I don't think people should push others in one direction or the other; nor do I think a judgemental tone should be used when discussing it. Especially with new people - they don't know as much, nor have they seen as much as the old timers and they shouldn't be treated as if they are doing the right or wrong thing. They should just be given information. That is my interpretation of why Brian works so hard for us to have this site.

There's nothing wrong with having a PEG or not having a PEG. I relate it to a pair of crutches with a sprained ankle - use the crutches and it's easier, etc. and you still get well; don't use the crutches and it hurts like hell when you walk and you can still get well, but you are taking an educated risk that could cause a facture or torn tendon or something worse. (simplified and not a TRUE comparison I know, but you get my drift)

IMO there are TONS of things in this hellacious cancer experience that we cannot help or control, and that is TOUGH. This is a fairly easy procedure that we can control and can help. Just my unscientific poll of people who have had one - there aren't many regrets and most say they would do it again.

Wow - didn't mean for that to go quite so long, but I just got started and coldn't stop LOL

Moffitt did not require me to get one and they did not insist when I lost tons of weight. There weren't to happy with my resolve either. Now since I didn't have one I can't naturally speak to what it's like having one but I have read many posts of people that had them that became dependent on them and used them for many months post Tx and complained about post Tx swallowing issues. I have also read about infections, cleaning issues, etc and so my purpose about my post is to give the opportunity to present both sides of an issue that is clearly not SOP with all CCC's.

I also did not have a ND so again I'm going to be an advocate for second opinions when it comes to that decision. I also was tested positive for HPV so when the "facts" dictate I'm going to recommend that test. The value of this Board is that there are many different opinions that can be offered so that newbies can fully discuss important issues with their doctors.

Colleen:


I wish your brother the best in his treatments. Its great to hear he can still eat. Hopefully he can eat enough to sustain him. Now is the time to push nutrition and calories.

I didnt want a peg tube at all, and hate the thing so much! I do have to admit, it has saved my life. I got to the point where I wasnt able to eat anything, even a sip of water burned my mouth and throat. There was no way I would have been able to swallow pills, the peg tube is great for taking meds.

This could be somthing that is very important to your brother's survival. Remember everyone is different and some have a harder time than others. Dont let it go to far with weight loss and poor nutrition before you look into the peg tube. Its better to have it and not use it than not have it and need it.

Remember that Ultimately it is your brother's decision to make, NOT the doctors, nor anyone else. Like David, I refused a PEG tube over strenuous objections by the doctors in the CCC based on the fact that I had run marathons 25 years ago weighing 136 lbs so losing 40 pounds from 177 still left me a pound to the good. I never needed hydration nor any IVs (except of course the Erbitux IV)and just drank my 6 Ensure Pluses a day. It wasn't easy but neither is a PEG. To show just how confused even the doctors are on this, here is an excerpt from an interview with the director of the Swedish Cancer Institute on PEG:

"H. JACK WEST, MD: How often are you having patients get a percutaneous endoscopic gastrostomy (PEG) tube prophylactically at the beginning, or are you integrating IV fluids regularly, just to keep people going? Is that a common occurrence, or is that really just a reactive approach, as needed?
VIVEK MEHTA, MD: The idea of a feeding tube or a PEG tube is one where I've been at both ends of the spectrum. When I trained, the idea was that we would not put a PEG tube in any patient because there was a portion of patients that could get through the treatment without needing the PEG tube. So, if you put it in everybody, you were potentially overtreating these patients with PEG tubes. Then, the idea that treatment breaks should be avoided became so compelling that you really wanted to prophylactically put this PEG tube in everybody, so that you could avoid it. You want to keep them nutritionally sound and hydrated; so you put a PEG tube in everybody.
I have now moved onto

Hi Colleen,

My brother did not want to get a peg tube. It was increasingly difficult for him to swallow and he ended up in the hospital for severe dehydration. He also lost a LOT of weight (right now, he is about 150# and is 6'1").

After the hospital episode, he ended up getting a nasal tube. They put it in while he was sedated because of how bad his throat and tongue were. He had the nasal tube for about 6 weeks, I think. The nasal tube was good for him for hydration and calories, but it was very, very slow. He had the nasal tube valve open as far as it would go, and it still took a long time to get the liquids in. He had to stay upright during the feeding and it really drained him of energy.

I definitely concur with Charm2017 that it is your brother's decision to make. Obviously, you and others (including doctors) can provide information to him. One of the things that Joe said during treatment was that he felt like he was losing control of his decisions ... that put us on notice that we should help him, but not tell him what to do!

Jean

I do not believe that it is credible to advocate not to get a PEG and at the same time write that one lost a ton of weight and did so against medical advice. Are we now advocating that loosing weight during cancer treatment is good?? Surely not.
Clearly you do not have to take medical advice or consent to treatment but you will have to live or die by this decision. What is next, deciding which tissues to irradiate, angles and dosage? There is a difference between an opinion and a qualified opinion.

I also disagree with the the statement that one is taking an educated risk. Since non of us know how we react to the treatment up front (how could we) and we have plenty of evidence that the majority suffers miserably, it is a gamble (hoping that one is the exception) and the odds are not good.

If you do not get a PEG the following may happen:
A) you will need a PEG anyway... which then will be more problematic. If you get radiated you will have a raw throat.
B) you might need hydration/feeding at the ER
C) you might get VERY lucky.

If you ask people who had a peg and therefore have experience what is like to have one, the following would be observed. There are those that absolutely needed a PEG and those may advocate that you need one. Then there are those who had one but did not use it or used it only rarely. Again! if you are VERY lucky you may belong in that group. Assuming now that you are lucky(!!) it is instructive to hear what that group has to say about it. If one scans the board the majority was glad that they had the PEG despite the fact that is was a nuisance. I did have a PEG and I used it only for a short time. Although I too lost weight I had no ER episodes for dehydration/feeding. In retrospect I probably could have done without it, nevertheless I am GLAD that I had the hated thing. As far as dependence goes: the fact that you have a PEG does not mean that you have to use it. Most of us want to get rid of the thing as soon as feasible. Stating that there is something wrong with those who are dependent on a PEG is just strange.


M

This discussion has been done here many times before, though the people have changed, the disscussion is essentailly the same. You have some people who didn't have a PEG telling people they should avoid it if possible, others stating how they couldn't have gotten through things without one. In my opinion ADVOCATING for not getting it is a disservice.

First, their experience is unique to them. Their treatments are unique to them, and someone else who is developing severe mucocitis, or swawllowing issues from the radiation treatments (it has never been scientificlly proven that anyone "forgets" how to swalllow) will be poorly served thinking that if someone else got through it without swallowing issues, they will too. These issues are directly related to neuro-muscular and tissue issues related to radiation damage in most cases. Even doctors cannot predict in their patient populations who will have swallowing issues and who will not, so the posters on this board being significantly less informed, and having significantly fewer patient contacts to actually develop a database of patient experiences to draw from, are poorly qualified to express CLINICALLY ACCURATE opinions. They can only talk about their own experience, which may or may not apply to the new person they are posting to. (Your milage may vary) ADVOCATING for something for another person, like NOT getting a PEG, which is only a successful path in a small sampling of all patients, becuase it worked for you, is a disservice. There is a difference between talking about your own experience and being an advocate for people doing what you did. David's argument that this is what he is doing, I do not agree with. He should talk about his experience, but advocating for not getting a PEG is wrong. He is not qualified to urge people to go one direction or another. He certainly has a right to have an opinion, but when the tone of that opinion turns to advocacy - I think this is wrong.

We all have a responsibiliy to provide people with useful information, and speaking of our own personal experiences definately helps people that have not gone through the issues realted to the disease and its treatment is very helpful and reassuring to newcomers. But there is a line that we should not cross here. We are not doctors, we do not know the unique issues realted to each new patient, their unique treatment plans, other collateral issues not related to their disease they may have, and their body's unique response to them, and the TONE of our postings should reflect that.

I don't agree with many things that are posted on these boards, but I only step in when I think that a patient might be getting wrong information, or an opinion that MAY cause them to believe something that might not apply to them. As an example, David and I have disagreed often about his posting to every new poster that they should get an HPV test. He believes this will be of some value to them. I do not, since it does not change anything in their subsequent treatment protocol, at least with what we know today. But his offering that question does not hurt anyone. It might answer a "why" question for them, but still in the overall scheme of things I do not believe it offers the answer to any USEABLE question. I think even that to some extent it confuses the issue at a time when they need to be making serious decisions. So I have quit talking to him about doing this. When somewhere down the road HPV status changes treatments, then it will be a valuable question, today it is not. But the bottom line, despite his passion for that topic, no harm is being done.

The PEG issue DOES NOT fall into that same realm. We can potentially hurt someone with an encouragement not to get something that will make their path through this process better/easier. Any argument that the minor issues that might go along with it, like some people getting an infection or similar minor complications, do not negate its overall benefit to the vast majority of patients.

Lastly, since two people have stated this, it is a patient's right to have or not have any given procedure. But to the vast majority of patients who themselves are not doctors, they are best served by following their doctor's treatment plan. If a doctor recommends that you get a PEG, you ought to follow their recommendation. Like Marcus has stated, you can refuse to have anything done, including radiation, chemo, and PEG tube insertion. My question is, at what point do you think you know more than the doctors and the institution that is treating you? If you knew so much, and thought that your opinion what better qulified than theirs, what are you doing being treated by them in the first place? The most important thing we can do as patients is become informed, and make the best possible choice of treatment facility, and/or doctors. That decision and learning curve is steep and has to happen rapidly. Once we have made that important decision, we have to start deferring to the years of training and experience that they have, and focus on dealing with our own battles, not the least of which is the emotional roller-coaster that we will be on for a significant period of time. If we are going to second guess these more knowledgeable doctors and institutions, I believe we are on the verge of interfering with a process that may save our lives, reduce complications, and negatively impact the optimum progression of events. This does not mean that I don't believe that some doctors can make poor choices, but on the PEG tube issue, I doubt this, except those that we have seen here that have been negligent in getting one for a patient of their who has loss massive amounts of weight, is nutritionally compromised and is in the emergency room for dehydration. If anything those are the treatment errors that we see here.

As to someone who thinks it is OK to drop to a weight that they were at 25 years ago, when they were fit and a marathon runner, I simply state for the umpteenth time... This is not about weight. This is about caloric and nutritional intake and hydration. Rapid weight loss even in a non-cancer individual, is not healthy, and dieters are told this with regularity. You may think wow, I am back to my fighting weight, something that has lapsed over the last quarter of a century as your lifestyle and nutritional and exercise habits changed, but the real question is what nutritional necessity has been compromised in that weight loss? What is your lean body mass ratio at the end of that rapid weight loss? I guarantee you that your lean mass is not the same as it was when you were a marathoner. You lose essential lean body mass along with adipose tissues, and this does not make you healthier. IT IS NOT ABOUT WEIGHT. Lighter is not healthier. That is an over simplification of a very complex situation.

As the the Swedish article, they put PEGS in 97% of ALL their patients. The end of the article is this Quote

Conclusion:
PEG is a safe and a well tolerated way of ensuring enteral nutrition in patients with oesophageal cancer. The risk of the PEG complicating any later operation is minimal.

In another article where they talk about complications, they clearly state that serious complications were mostly related to inexperienced doctors doing the procedure. And as to long term PEG users, there are many reasons for this, none of which are worthy of doctors intervening in the process. Often they are older patients with other collateral complications, that have dysphasia, chronic aspiration pneumonia, and other reasons to keep them. There is no down side to people having them for protracted periods should they choose to, though it is clear that the vast majority get the PEGs out soon after treatments end and ability to eat normally returns.

Just to clarify my point - I certainly think that doctors should provide information AND direction. My comment about "this being the patient's decision" was meant about well-meaning friends and family who might steer the patient in one direction or the other because of personal opinions, rather than medical information.

Reasonable people can disagree without being disagreeable. While my PERSONAL not CLINICAL opinion is that doctors and forums who advocate procedures be applied uniformly whether or not an individual one needs it are wrong and need strong voices to make them reconsider and do BETTER; flame wars won't accomplish that. One only need to look back at breast cancer treatment to see how defering to doctors following overtreatment regimes worked out (not too well). Brian's passion and concern leaps out from his posting and I should have recognized that typical posters on this forum may be more likely not to be comfortable nor even able to have good doctors get better through dialogue and challenge. Yet it needs to be done and I worked hard on being "the patient from Hell" (good book).
I was indeed very lucky, but NOT in any reduced mouth sores, mucositis, or ease of swallowing. Each ensure plus took a half an hour to finish, with one sip (not a swallow) then rinsing out the glue like mucous with seltzer water (15 cans a day of seltzer). Sure everything I forced down burned and hurt, but that's where pain medication helped (since I was taking it anyway for the peeling skin and major radiation dermatitis)
Where I was very very lucky was in getting a top notch medical TEAM at one of the best CCC: Lombardi Cancer Center at Georgetown Univ in Washington DC. I had doctors who took the time to individually evaluate me rather than apply overtreatment protocols like PEGS or NDs. Doctors who were willing to let me decide on just Erbitux and IMRT rather than the "gold" standard of cisplatin, Erbitux and IMRT. Was it easier for me than most, with a medical malpractice background and experience in evaluating and understanding medical articles and journals? Sure, but unfortunately, given the paucity of real information on oral cancer, it's not that steep a learning curve. True, we disagreed on the PEG, but that's because ironically they just used the weight factor in looking over the charts which Brian correctly notes is not the way to evaluate this. Once I was able to convince them that my lean muscle mass had increased dramatically from my skinny marathon days, they did the responsible thing: accepted my right as a patient to take risks even if they disagreed. I still bug them on follow up visits on when they are going to start a real exercise program instead of working 15 plus hour days and being as unfit as the general population.
That said, this will be my last post on either PEG or ND, since these are obvious hot buttons on this forums and my experience is that despite my opening remark, discussions on true believer issues invariably becomes disagreeable. There are lots of other topics and advice here where the individual's experience is indeed valuable and probative, i.e., if a poster notes that it was a full year and not three months before their taste comes back, that is comforting to those of us still dutifully chewing cardboard.
So keep up the good work

I would not be one to argue for blind adherence to medical dogma, there have been far too many instances in medicine where those ill informed, or comfortable in their ways, have continued to treat patients with techniques and ideas that have been out of date clinically for years.

You were likely a formidable litigator when that was your venue, and you argue your points well. Before replying, I wish to be the first to say that disagreement is healthy for the most part, and I will be the first to also clearly state here that I am only speaking from what I have seen from 7 years of doing OCF now, and listening (I do listen, for those that might believe otherwise) at cancer conferences where I am on the program or attending to further my knowledge. Even with these assets, there are untold gazillions of topics and issues that I am significantly under qualified to even have an informed opinion on. I am not here to prove to anyone that I know tons, or seem like I am opposed to any views other than my own. I just am not vested in things that change as frequently as they do, as I continue to learn more. You will see me frequently defer on these boards to others like Gary who has likely forgotten more about radiation that I will know, and others more versed in other topics. This is not my fiefdom, nor do I care it to be.

You became a very active part of your treatment process, and in that respect you are unlike the vast majority of patients. I am always appalled at those on the extreme other side of things, that really do not want to know anything about their disease, or the treatments that they are going to be subjected to. This blind trust defies all logic, but some find the cancer diagnosis so emotionally overwhelming, that dealing with any of the treatment choices is just more load on an already overloaded mind. They just defer to have things done to them, deferring to what they believe (or hope) is a great doctor.

I still respect your decision to choose your own path through this, but I find the logic of it all elusive. You clearly state that in doing without a PEG, it was painful to eat and drink, and that only through pain meds was doing this possible. That eating was time consuming in the extreme, and certainly far from pleasant, even painful. So given these points, why, if an easier path that required less pain, fortitude, potentially less medications, and discipline was available, would one not take it? None of what you have stated yields a tangible benefit to the decision to go without. That you didn't have to undergo a minor surgical procedure would be one, or that you might have been one of the few who develop some complication, could be added to a list of potential benefits, but I think you paid dearly and unnecessarily for them.

You may be the exception in many ways because of your high muscle mass ratios even at your age, your tolerance for pain, or more. Those qualities perhaps do not define the average person on this path. They do not even define the average American, who is too often like your doctors, out of shape to the extreme, and if like me, a whiner of extraordinary intensity. Given this, while I applaud your fortitude, and especially your seeking of information that would allow you to make good decisions, I do not think your example is ideal for the bulk of individuals.

I also do not think that this thread has taken a negative tone. I do not sense it in your post, and I did not intend it in mine. If we are going to explore something, it will require people to dissect opposing perspectives until we distill an appropriate end. We could choose to not do this, but then anything could be said on the boards whether or not it was valid, applicable to the common experience, or even harmful. That would be unacceptable.

I would like to say, as in most things, there are no absolutes. To PEG or not to PEG certainly falls into that realm. But I think we should leave the discussion (and this hijacked message thread) with some thoughts, such as; excessive weight loss (as indicated by the original poster in this thread) is indicative of things which are not good happening to a person's health, at a time when it is compromised in other ways as well. That for those who wish to chance it, that they can certainly try to go without a PEG, until it become measurably obvious this is not the correct path for them. I myself fall into this group because I was dead set against getting one. By week 3.5, I had lost massive weight, and my doctors were not going to allow me down that path any longer. So I understand the motivation and the reality. I do not think that for those who wish to, particularly in elderly patients or those with other medical issues, that having a PEG installed prophylactically is unreasonable. If they do not use it, which in this group I think unlikely, they can always have it removed without incident or undue harm when the potential need for it passes. Using my gastro doc at MDACC, whom I spoke with today prior to this reply, as a reference point, more than 85% of all the head and neck patients that are receiving radiation at their institution end up with PEGs, sooner or later. That means that 15% manage without it, but in his opinion not without some loss of nutritional benefit and whatever unmeasured slowing in healing, loss of energy, reduced immune response, etc. that may entail. Those individuals also make up a disproportionate number of people that end up needing emergency hydration. I defer to his comments as someone who sees hundreds of patients a year, and is significantly more qualified to comment.

I think it is reasonable that people that ask about PEGs here on these boards get a full picture. That we clearly make the benefits of them known, mention the possible complications, and discuss the nutrition issues in detail. If someone wishes to mention that they were part of a minority that got through without one, so be it, but I do not think we should be advocating for what is a minority position here, and at treatment facilities. I do not believe that PEGs are common because doctors are failing to change with the times or technologies, but because the are still not only useful, but there are no significant other options for people at this time, a situation that may or may not change as treatments and technologies evolve. I have no problem with you or anyone saying they didn't have one, as long as that is said in context of an overall picture.

The only personal observation that I will make RESPECTFULLY, is that you are new to much of this, and when you have watched hundreds of individuals post or talked to them for several years, your perspective on this perhaps may change. You may develop the sense that your path was unique when compared to the many.

"Deja vu all over again"-I remember being part of this debate more than 3 years ago, when I was extremely thankful that my husband HAD a peg because we were 3 hours away from an emergency room that could rehydrate him or give him IV pain meds. because he could not swallow anything. Brian speaks eloquently to this issue again. Amy in the Ozarks

Thank you, Brian, for being on top of this yet again. As someone who did end up suffering long term dysphagia to the point where I still require a PEG to get all my oral nutrition (and I am an extremely rare case to any of you wondering if this happens often) I feel the need to say that I find it extremely hurtful and frustrating that anyone would perpetuate the clearly mistaken notion that my swallowing problems were in any way caused because I was "dependent " on my PEG--with the impliciation being that there is a psychological dependendency that goes on. It is true I was and am *physically* dependent on my PEG and each and every day for three years I have HATED that but it has also saved my life. My dysphagia is not and never was a matter of just not *wanting* to swallow badly enough because I ahd a PEG, it was caused by radiation, and to imply it could be caused by having the PEG--even when one has been informed several times, as David has by Brian, that that assumption has NO medical support-- is really insulting as well as misleading to new people trying to make hard decisions.

Nelie

Hi everyone. Wow, this whole PEG issue certainly is a hot topic! Yet, I'm glad to see the discussion and to read the advice from EVERYONE, those who would advocate for it and those who don't feel it's necessary because - for me anyway - I like to know every angle of every aspect of his treatment.

Being that we are just out of the gate here, and have only completed one round of chemo (by the way it's Taxotrene 1x(sp?), Cisplatin 4x and 5FU 4x) it is probably way too soon to tell. The doctors have spoken about the possibility, but right now we're at a "wait and see" kind of place. Certainly, I want to keep my brother from having to deal with any additional pain, but I also want to give him every weapon in the arsenal in order for him to reach our goal of remission. What we must do we will do, and if that means a PEG tube down the road so be it. We're just not there yet. He has been eating so very well the last five days (after the london broil night) and has put back what he lost in the first days after treatment. Am I naive to think we can keep this up? Probably. But for now, since he still is enjoying life and food and grabbing every moment with delight, I'm not going to belabor the issue with him.

Here's a question for caregivers - and I probably should post this in the caregiver forum - but either I'm having sympathy pains or I'm just a hypochondriac (sp?). Has anyone else experienced this? I mean, sore throat, swollen node (could be from a bad tooth I have), but boy do I feel silly! I'm all nervous about my own health and have appointments with doctors and dentists. Am I nuts?

Thanks for all your good advice guys.

I don't think you are over reacting by getting yourself checked out with a doctor. It is safer to get it checked out. I am glad to see things are moving along with treatment. Please keep us posted and let us know if you have any questions or concerns.

The opportunity to pack him full of high quality proteins and nutrition right now is something that he should take advantage of and you encourage. Not empty calories for calories sake to put on weight, but a calorie dense regime that is nutritionally sound. When he moves into the world of radiation, after a couple of weeks he will likely hit a wall. That is where the desire to eat will wain. Being ahead of the game will be an asset. Watch his habits, and have him keep a daily journal of meds and food intake by type and calorie. When you see a trend that this is dropping off, will be time to consider options. But be careful of allowing this to go on for too long, especially to the point of under 1000 calorie or worse days in sequence.

[quote=Brian Hill] Watch his habits, and have him keep a daily journal of meds and food intake by type and calorie. [/quote]

Thanks for all of your guidance Brian - but what exactly do you mean by the above? Do you mean he should list his caloric intake and then break that down by proteins, fats, carbs, etc.?

What most of us put on a "chart" are number of calories consumed at each sitting [usually not broken down into carbs, fat,etc.] and ounces of liquids. Pain meds are charted by type and frequency.
Example: 7 am: 1 scrambled egg= 110 cals
1\2 cup oatmeal with whole milk 95 cals.
8 oz water
meds: 1 hydrocodone
temp\blood Pressure- optional but a good idea
10 am: 1 can Boost 250 cals
12 oz can 7-up [liquids + cals.
You can set this up however, but if your "patient" gets down, the more info you chart, the better informed you can make the Docs or nurses. Amy

You want to spot trends, not just a day when things didn't go well. Also when the pain meds kick in, it will be really easy for the patient to forget if they took their meds, what they ate, and more. I double dosed myself with morphine one day TWO TIMES.... needless to say this can have dire consequences. Someone else can total calories up and see if you are getting anywhere near the approximately 2000 needed, and help make adjustments. This is where the PEG comes in handy. Everything tastes like cardboard, everything hurts to eat, you are lethargic, you just want to pass on eating all together and sleep - and the pain meds facilitate this mindset. Before you know it, you have gone several days on 200-300 calories a day. The PEG means that while dozing in the recliner in front of the TV the calories are slowly dripping into your stomach without any of the negatives mentioned above. When ready, you can start to add back in soft, wet foods. I ate canned cold peach slices by the five gallon can (Costco) when I started back on food, and as you read here, people find much else. But none of that is complete nutrition, so the PEG balances the little that you can eat by mouth with getting what your body really needs to repair itself.

Ooooh! Gotcha. Okay. Makes sense now that I've seen it written out.

Thanks again Brian.