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