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.