As a grizzled veteran, if not primary combatant, in the intermittent PEG wars here at OCF, I was delighted to open my Google Reader of the OCF Oral Cancer News feed to see my Radiation Oconologist at the Georgetown CCC talk about PEGs.
[quote]Another Way to Minimize Dysphagia
Dr. Harter had some practical advice for all clinicians � IMRT users or not � who want to reduce dysphagia in this setting.
�Elective feeding tubes should be avoided unless nutritionally essential,� he said.
Feeding tubes themselves are contributors to long-term dysphagia, he explained. �The presence of a feeding tube tends to reduce use of the swallowing mechanism.�[/quote]
In past exchanges many posters have discounted my stance that a feeding tube should be only used when essential and not "just in case" due to the danger they pose to swallowing.
It was my RO's support that also got me thru the first time without a PEG and colored my opinions. He did warn me that the second round of radiation would put me at risk of never swallowing again but agreed with the ENT surgeon that the pathology report of perineural involvement and lack of clear margins after the surgery made it a necessary risk.
Yet another reason to love OCF, despite internal opinions, it always reports both sides of any controversy and does not censor reasonable dissent.
Ironically, I am on feeding tube for life, so I am not totally rational and certainly not unbiased on this subject.
Charm
Charm,
You just gotta let the PEG issue go. lol
I HAD to respond on this issue.
Why is there such controversy about the PEG? If it helps one get through treatment and get on with life, then it is a good thing. Let us please drop this "good PEG, bad PEG" bulls*#@...Why must those who don't believe in it make it an issue? Isn't there enough that the OC patient, caregivers, and families have to deal with regarding this horrific disease? Is this a contest to see who's better--PEG users vs. non-PEG users?
Anita,
This feud is going to continue as long as new patients keep showing up at this site. There are those of us that chose the no PEG option and it did work out for us. I still remember when it was highly recommended that I get the PEG by my RO�s head nurse. She went through the whole routine with me on the problems I could face.
It was obvious I was going to man up and go without one. The male nurse who was there the whole time came to me after and said, �if I was in your shoes I would probably not get the tube either BUT that would be the wrong thing to do�. In other words the guy was siding with me on the macho side, but had to give a nod to the RO and the other nurse.
The thing I hung my hat on was the fact that they could insert the tube at a later date (although by that time you have encountered some problem that makes things harder to deal with). It was a control issue with me. I could control that aspect of my treatment and hated the idea of the tube.
You will see me advocate on this site for new patients to go ahead and get the PEG. If I had it to do all over again (your going to hate me for this) I�d go without it.
Anita
When the posts on OCF are neutral instead of urging an elective procedure, I won't have to post about it. I'm all for detente but the advice on OCF is very pro-PEG with active denial that a feeding tube does pose a risk of having difficulty swallowing later or even eating solid regular food and being relegated to soft "easy to eat" after TX.
Do I bristle at those who urge every oral cancer patient to get a PEG �just in case�? Yes. Do I seethe when my supportive comments on patients trying to avoid a PEG are denounced. Yes. Will I continue to "rise to the bait" each and every time those post appear. Yes
Why? Well for me, not getting a PEG was psychologically significant. It meant that this terrible Stage IV Cancer at the Base of my Tongue was �not the boss of me�. Despite the pain, I could and would literally force myself to swallow cans of Ensure Plus down the festering mess that used to be my throat before the radiation and chemotherapy. At the end, I awarded myself an imaginary medal for my �bravery� and endurance. I was able to quickly eat solid food again.
My initial posts mentioning studies and opinions that using a PEG could cause �withdrawal� problems or put a return to normal swallowing at risk, reignited the then dormant PEG Wars. I won't even go into the private messages from the true believers as though I had violated some taboo on urging resistance to the PEG. Others took the tack of appealling to my arrogance & pride with a variation of �yes, it can work for an exceptional person like you, but consider the common patient�. But the PEG wars were here before me and they will be here after me until there is a real balance on the board.
Charm
Charm
If you Google 'Dysphagia and Chemoradiation' there are many studies on this common morbidity.
I'm sure Clinicians at major CCC's have known about this and have dealt with it for many years (with or without PEG patients).
I think the contribution of this study is actually Dr. Harter's successful results in blocking RT to critical swallowing structures. I read where MD Anderson is also doing and recommending this.
Also, the 'Study' states: At Ann Arbor CCC ... "Feeding tubes were inserted if weight loss during therapy approached 10%".
As a member of the peg free community and a long standing member on this forum, I have seen these wars from the beginning. I have always said that if you have any surgery in the mouth or difficulty swallowing going into treatment, that it would be foolish to try to tough this out. But for the few of us who are eating with no difficulty before treatment starts, I would wait to see if the peg is really needed. I'm not against the peg, I just don't think EVERYONE needs one.
I'm glad to see that article, because I do believe that many just give up swallowing when they have the peg and unfortunately unless they are on this board, no one may warn them of the consequences.
Take care,
Eileen
My oncologist insisted that I had the Peg installed before my
treatment began. I did fine untill almost the end & suddenly It was as though a switch was pulled. The taste of thing's except water made me physiically ill! I am going on three month's post treatment & can hardly wait to have my tube removed. Eating is a challenge for me because of the usual lack of taste.Plus salivary gland's are not functioning. I have not lost any weight however, so I did benefit from it's use. However, I can understand that some people could become dependent on it. Hopefully I will have mine removed soon. I just wish I could enjoy food more as I have no appetite, but sure do miss the social part of eating in restaurant's etc. It all comes down to what our specialist's recommend & personal choice.
I think there is an important take way that IMRT has offered us, that is relatively new in the last 5 years as we have learned more about using it to full advantage. RO's everywhere, when IMRT appeared, no longer could look at general areas to be radiated, but they had to know anatomy as well as a surgeon, which they never did. There was, and still is, a learning curve at play here. Many institutions in the US unbelievably do not have IMRT capabilities even today. Many RO's are getting up to speed still on the complete opportunity that IMRT presents. The article is clear about a couple of things, the most common side effect, xerostomia, has been greatly reduced as more RO's understand, and are capable of mapping around the parotid glands. The impact of this is profound to the degree of dry mouth someone has. The issue of damage to other structures is still being explored. Even with IMRT though, some patients hsave to have radiation pass through the parotids.... and they will have a problem because of where their disease was located.
What the many PEG wars here never really get into, is cause and effect. There are those that believe that if you continue to use your swallowing muscles all through treatment, that you will be guaranteed of not having issues at the end of treatment. I wish it was that simple. Dysphasia is a direct result of the damage done by radiation to the nerves that control the swallowing mechanism. In different people, with different locations of disease, the angle and impact of the radiation beam, the radiation hits those nerves and they go south. You can continue to eat by mouth as much as you want, but once that nerve control is lost, you will not be able to swallow properly, and like me, you will have some degree of dysphagia. It gets worse over time because the damage to the nerves gets worse over time....slowly. So I urge people to try to swallow as much as possible during treatment just in case there is any validity to the "forgotten ability" that so many elude to. But even in the oncology community, this mechanism and loss of it, is not well understood, is not provable, and is disagreed upon by everyone, and I am finally glad to see someone say... let's map around this area if it is possible, and not be so cavalier about nuking it in the future. Then long term outcomes for swallowing will be better.
If you think the disagreements here between those of us that are all lay people are "wars," you should hear the oncology professionals arguments at meetings that I attend. They are divided between those that understand the issues of control vs. those that think it is a forgotten reflex. One is provable, one is speculation. There is probably some merit to if you don't use it you loose it side of things, but the bigger issue is the radiation damage. That is why there are such different opinions between all of us here. We were all treated differently. Some had surgical only solutions which completely (unless vital structure is removed) eliminates the radiation to the area of concern cause and effect. Some had radiation that likely, because of angles and tumor location, the radiation missed or only lightly touched this area of concern. Of course they too had much lesser swallowing issues post treatment. Some of us got nuked to the max and with or without a PEG during treatment, we have poor outcomes related to swallowing as time goes by. As a reference, in the first 5 years I didn't have any real issues, and I PEGGED for a protracted time. But as the radiation damage progressed insidiously, I lost the ability to control it all. It was a shock, since I thought I was one of the lucky ones but... that frackin radiation just keeps on doing its thing, and here I am, more than a decade out, and getting to the point of gagging on almost everything, and aspirating liquids into my lungs with regularity. But we all believe in our outcome wherever we fall on the continuum - PEG or no PEG - and we think we understand why we are where we are. The radiation issues, if we all got together with our treatment programs to compare, would elucidate the differences in us I think.
If you destroy the structures and nerves that allow you to swallow with radiation, attempting to force your body to do something that it no longer has the tools to do, would be akin to a person with a spinal injury getting out of their chair and walking. The damaged nerves will not let them no matter how much they work at it. Does this mean that a person with only "some" nerve damage could not "train" different nerves and muscles to adapt. NO. They can to some extent. But absolute prevention of dysphagia by swallowing during treatment is a belief that a simpler cause is at play... your body forgot in 7 months, how to do something that it had been doing for 40 or more years. That argument does not have lots of scientific legs in the published literature, just articles mentioning the fact that swallowing ability is lost.... the why isn't explored in any unbiased scientific way.
Just like my inability to move the right side of my face or mouth from the facial nerve being nuked, which gradually after a year or two got worse and worse, and continues to.... the damage to these controller nerves and other structures mentioned in the article is a reality. Continuing to try to swallow, will not change the radiation damage to the nerves. No nerves...no swallowing. That is a direct, provable cause and effect.
But the scientific argument is leaning towards -- it is the unique, different pattern of radiation in each patient, that determines how much influence this has, and less a forgotten ability to swallow. I pegged and swallowed both every day all through treatment, and I still have dysphagia. I still have strictures. So MY belief, and that of the more experienced IMRT RO's that I talk to is; that this is a radiation issue, NOT a PEG issue. I can tell you personally that the flack the article is raising in the treatment world is already today significant, and the barbs are flying. Bottom line is that too many RO's are behind the knowledge and experience curve. Too many people outside the understanding of long term radiation morbidity think they know what's what. The two will stay apart for some time to come in my opinion.
Brian
Nice reply and very informative. I could not agree more about the insidious effect of radiation on swallowing. In retrospect, it's clear that I was able to do without a PEG and continue to swallow due to the careful and meticulous radiation plotting of Dr. Harter in his administration of my first 72 GY IMRT.
Thanks also for keeping the tone of this thread level and courteous. Reasonable people can disagree without being disagreeable. [although you would never be able to tell that from many of my actions & words both in the workplace and cyberspace forums - which is why I add the 2017 qualifier to my cybername as I aspire to be charming by 2017]
Charm
That's a worthy goal Charm. I only aspire to still be here in 2017.... (Reality sucks) Perhaps I should work towards some self-improvement at the same time, instead of just being good with staying a crotchety old frack.
I'm fairly new to this forum. I agree with Anita. I don't understand why there is, or should/would be a war on the subject of PEGs...
My Oncologist, like many of yours, insisted I get one. I didn't have it installed until a couple of months after my chemo port - so I could still swim in the hot Texas heat as long as possible... but the Docs wanted it in before radiation started.
I knew to keep swallowing as much as I could throughout both chemo and radiation. But once you're 20 or so radiation treatments in... the PEG had to be used. Same for after radiation. It was weeks or months before I could eat on my own. I could drink, but my throat was swollen almost shut by the radiation, it took six endscopy treatments to stretch it out so I could eat on my own again.
I struggle now, as many others do, to maintain my weight without the tube, but I don't miss the PEG at all - I hated it. But it did it's job. I really don't understand why there would be a war about them...
Mike
It's not really a war, just CCE (Continuing Cancer Education). When I read remarks like [quote] But once you're 20 or so radiation treatments in... the PEG had to be used.[/quote], I share that it's simply not true for everyone. Otherwise a new person may read it and not realize it's not necessarily so. It was true for you but not for me.
I did 40 Radiation TX and never needed a PEG. So did many others. As Brian noted, even oconologists heatedly discuss this. I am getting a much clearer view that most of the posters (myself included) echo what their RO believed. Some think it's necessary, others like mine feel it is not necessary but only a last resort.
As I told Anita, as long as posters blithely assert that a PEG is necessary, I will present the counterbalancing facts.
Deciding to get a PEG is an elective procedure and like most choices, it is best made with knowledge.
I never liked the term PEG Wars but it was how my posts were described back when I joined OCF as I picked up where others left off. Thanks for inspiring me to come up with a new name
Continuing Cancer Education
The rule at MDACC is that you do not have to have a PEG. But if you loose 20% of your check in body weight, you will get one, and have no say in the process. You have proven by that weight loss that you are not able to keep your nutrition at levels that optimize healing and recuperation from treatment, let alone keep your immune system at its optimum.
Brian
Just makes me appreciate all the more that the Lombardi Cancer Center in Georgetown University which is run under the auspices of the Jesuits within the Catholic Church does not deprive its cancer patients of [quote]a say in the process[/quote]based on a criteria that does not take into account whether you are already 20 or 30% overweight, your percentage of lean muscle mass, prior weight history, or just motivation. Of course such action would not be in the Ignation tradition of Cura Personalis
Explication from my seminarian days for those not steeped in Catholic minutiae
[quote]Cura Personalis is Latin for "Care for the entire person." Cura Personalis stresses attention towards the individual needs of others, respect for their condition and circumstances, and a sincere acknowledgment of their uniqueness.[/quote]
But hey, we had this conversation back when I joined. You certainly have tempered your response and make your points better now. I need to work on that.
I see however our respective views remain unchanged.
Charm
Hi All,
I have to chime in here. I've been following the "Peg Wars" debate since joining the forum. Richard's RO insisted he have the peg before treatment started, just in case. The idea was creepy to think about, but at the time we were shell-shocked and did what the RO recommended. Luckily every day of treatment, even at the end, Richard was able to force himself to swallow nutritional milkshakes and Ensure. Whether it was his stubbornness or the IMRT or a combination, he was determined to swallow every day. He had to have his large mug of coffee each morning, no matter how crappy it tasted. It was like a familiar ritual that was an important symbol that he could get through this ordeal. It may sound silly but, as you all know, life changes forever and sometimes it's the little things that help.
So for Richard the peg worked as it should and he was able to resume eating and have it removed. It helped him to maintain a good weight and stay hydrated. He has no regrets and is thankful it was available when needed during treatment....Geri
I haven't been here long, but I already feel like I shouldn't have posted anything anywhere. I try to ask a question or post my own experiences, I feel like I'm attacked, or corrected, for doing so... if you're not an old timer, or admin here - your opinion or experience is somehow less valid. I thought I was going to like it around here - I may have been mistaken...
Mike,
Your opinion is eminently valid. You just happened to drop into a long running debate. By the way your opinion happens to fall on the side of a majority here who feel the PEG is an absolute pain in the ass and also very helpful.
We have an open and honest forum here. Sometimes it can be a bit too open and honest. I know when I first started posting I was corrected very bluntly by a few here (Eric, gotta love ya) but I got used to it and learned to love this place.
This is a place where we are not always nice but we are almost always honest. I can get nice out in the real world by pulling the �I have cancer� card. Honest I come here for.
I read your posts word for word. Your contribution here is appreciated. Keep in mind that for every poster here, there are a number of people who just lurk. They are OC patients too but do not post. Your contribution here makes a difference even if you do not see it acknowledged by the regulars.
Contributing your knowledge and experiences may make a difference in someone else�s life that you never know about. So keep posting. You are doing more good then harm just by taking time to relate, debate and opine here.
Mike
Sorry you mistook me for an old timer or an administrator. That's all I'm sorry about because none of the old timers or administrators here deserve to be lumped in with a complaint about me. They are truly outstanding.
If you frequent forums where your your personal experiences are accepted unquestionably as valid for other cancer patients, OCF is a chance to expand your comfort zone. I did dispute your 20 radiations require a PEG assertion . BTW, thanks for your implicit agreement by terming it a "correction"
My dear sainted mother always pointed out that "it takes two to tango". It's not like I didn't preface the whole thread that this is controversial. You chose to push back on my opinion. Good for you. I pushed back. You don't need to tango at all. Lots of threads to share or ask real questions.
Don't abandon OCF because you don't like me. The majority of the posters here are very sweet and probably "feel your pain". I don't.
PS. Everything is personal. I just got back from an emergency visit to Lombardi Cancer Center Interventional Radiology because my feeding tube suddenly just fell out and would not go back in. turns out the ballon that holds it in just deflated after 4 months. So thats my experience I can share with you..
Charm
Mike, given all that you have been through, you can tolerate a bunch.... that you can't tolerate a few people (perhaps me included) on this site seems unlike a person that can take these treatments and still be left standing.
This board has over 100,000 threads of discussion on it and many times more individual posts. I think that a simple look at them will show that they are not the work of a few people but the voices of many, thousands. They don't always agree, and certainly have different levels of knowledge, and all have different experiences as they go down this path. That a group that diverse would all sit down and sing kumbaya together is optimistic. Hell, oncologists between each other, argue more than we do here. The vast majority of the posts here are supportive, and empathetic. And if you doubt that, look at the posts related to Danny Boy, or Minnie, just to pick a couple, and tell me that this board is not full of caring people.
If someone has posted something that may be technically incorrect, there are a few here, say Marcus, to a lesser extent me, that are on science or oncology programs routinely as a matter of our work. I try to state what the science states. If I have an opinion that is not supported by that, I try to say so. Bottom line is that what makes these boards unique in the world of the web, is they are carefully monitored in the open and in the background. Nothing could be worse that incorrect information being allowed to live on the boards that might allow someone to make a bad choice or worse - hurt them.
Open dialog is necessary, and sometimes there is passion associated with it. You should not misconstrue passionate debate for meanness, or something negative.
Charm says that he is going to work towards being more charming in his posts by 2017. In the meantime we will have to deal with his, for the most part, candid and useful posts as he is today. He can be quite knowledgeable and helpful to others. As for me, it is unlikely that I am going to be any more likable in the future. I am certainly an acquired taste. But these boards are open to all, but having said that we have banned people that are grossly uncivil. But they are also not a democracy. We keep them free of people who cannot be civil, we keep them free of people trying to sell something, we keep out of date ideas from prospering here, we work hard to see that the information is useful and supportive. It is not a perfect world and these boards also are not perfect.
[quote=Charm2017]Mike
I did dispute your 20 radiations require a PEG assertion . BTW, thanks for your implicit agreement by terming it a "correction"
[/quote]
Radiation closed the top of my throat to less than the opening of the average drinking straw. That is the REALITY of my experience. I'm glad that didn't happen to you...
Is there a 'roll eyes' moticon?
Everyone responds to things differently, and every treatment plan is as individual as we are biologically different from each other - yielding vastly different outcomes and collateral damage for all. Gross generalizations give beginners a picture, but you are definitely someone that had an experience that no one would argue is less than extreme. I don't see how anyone could think that you could even drink let alone eat without a PEG. This is a valuable point to all those who argue in the PEG war debate here, that one size does not fit all, and that posts should reflect our own experiences, and not insinuate that others experiences will be anything like ours. They may draw "possibilities" from our experience when planning for theirs, but in the end, their experience will be just that... theirs.
Mike, please don't "go away" from these boards because of feeling attacked. The typed word versus the spoken word can sometimes come across as harsh. When I first came to these boards I felt "attacked" or not treated to kindly on at least one occassion. The information and support I get here keeps me here. Some people are just very passionate about their view of things. I try and not get involved with the "PEG wars", it's not worth it to me. My husband had a lot of scoping and surgery done before he started his treatments. I have no doubt that he would have been hospitalized without the PEG. He didn't start using it until week 3 and even with it in lost 30 lbs.
In my opinion it doesn't make anyone stronger or more macho because they toughed it out without a PEG. My husband didn't have a port or use prescription pain meds. Does that make him more macho? I don't think so. Everyone responds to treatments differently and whatever gets you through is what counts. Keep reading and posting.
I agree Wanda - the whole 'war' seems petty to me.
I was looking for a place to learn, and place to share. Not a place where I would be talked down to, like I didn't 'do' my cancer correctly...
So far, I've been told here that my Doctors are not qualified... that I am not 'man' enough since I used a PEG...
Cancer is hard. Hard on the patient, hard on their loved ones and care givers. I expected this place to a lot more warm and fuzzy, and a lot less of the beat down that I've experienced...
Maybe there is a reason there's not a single color bracelet for 'our' cause...
Mike
I was just about to post "Now that's the spirit" over your clever reply about needing a "roll your eyes" button.
Then I read this latest tale of woe, so I took five minutes to read all 24 of your posts about gout, spicy foods and of course this thread. With the obvious exception of me on this one thread, you were treated with courtesy and quick responses from administrators.
Finally, you are quite the sensitive soul if you consider my posts a "beat down". Take a look at the real beat down that Eric and I exchanged in when he first joined. Or some of the other posts. Or even read Brian's first replies to me back when I had just joined the board. His replies to your posts read like a love letter in comparison to his replies to me
Cancer is hard, which is why we have to be harder.
Charm
Mike. If you have a problem with me in particular, please PM me and let's take it off the boards. It is not productive for people to be having to read this back and forth about attitudes, when their lives are full of so much other more important stuff. Charm I ask the same of you.
These boards cannot be everything to everyone, and there will alway be someone who didn't want to hear someone else's opinion. They are open to the public, and that in itself is part of the problem. You don't get to pick your posters. For my own part, all I can do is try to get solid science out there, and as everyone knowns, I am not the warm and fuzzy poster, I leave that to the many others here that really are much better at that than I will ever be. So I am not going to make excuses. If someone finds a board with better information, or they just want hand holding, they should try some of the few others that are out there. There is likely a "fit for everyone" but no single board anywhere is going to be able to control the posting of every person that comes on board, nor will they all have the same/equal levels of compassion, or knowledge. We try our best. But controlling over 6k people with different ideas, keeping the truly difficult ones at bay, seeing that snake oil salesmen are removed daily, seeing that grossly offensive people are collared and removed is a daily job for someone. It's like herding cats. I can't do it all the time, I have the missions of OCF to deal with most of my day and evenings. And to say the least board monitoring can be a thankless task, but one worth of trying to do. I am going to close this thread now.
The last thing that I wish to say is; that I do not think that, with the exception of one or two people that we have banned from the boards over the years, that anyone comes here with the intention of trashing someone else. This is not a blood sport arena. But it is a place of facts about people's experiences. No two are exactly alike and your milage may vary. If someone wants to put on another color band - it is a free world. If someone believes that the multicolored people or the teal people or whomever does it better, they will leave us on their own, and nobody at OCF is "selling you" on the idea that someone has to fly our colors. I really have to get more moderators to do this kind of thing. It takes to much time and to be frank, it sucks. There are people dying out there everyday and I am taking time to play politician/policeman in a sandbox.