Nelie,
I have been unable to contact you with a private message. It says that you are "over the limit." I would love any information you can give me. Thank you so much.
Gerry

That's wierd. I got your message and just sent one back. I will go and clean out some of my old messages.

This PEG issue will NEVER die! It's been going on since the beginning of the forum.

For the record I refused a PEG, one doctor was for it and the other AMA. I lost over 60 lbs and had a long and tough recovery. The RO had serious doubts that I would even survive. It took extraordinary work, narcotics and pain to maintain swallowing (even water). I was hospitalized 3 times for rehydration. Going PEGless is not for the faint of heart, a difficult and arduous path to take. There are a scant few here who mananged to do this without a PEG.

Conversely the PEG has saved many lives, in hindsight, I probably should have gotten one. One thing I will not do and encourage all others here is to give specific advice on the PEG issue. The purpose of the forum is to offer your own personal "experience, strength and hope" - not hand out biased or mean spirited comments about an individuals personal choices -even if YOU perceive them as well meaning. The vast majority of us are NOT doctors and we need to be careful about the fine line of sharing our personal experience and giving advice.

Maybe the muscles do atrophy and need retraining but they have specialists who deal with swallowing and stricture issues. If there is hard science that demonstrates that maintaining swallowing is a benefit - please show it to me. I honestly have not seen any studies on this - only anecdotal comments and theories.

Danny G, one of the original members here was on a PEG for years and finally got off it and has returned to normal. Since we all respond differently to treatment there is no "one size fits all" here. My swallowing is hardly perfect and I didn't have a PEG as I stated earlier.

PEG tubes also cause much consternation and fear for newcomers especially and we need to be sensitive to their needs as well.

As long as there are new posters and patients coming to our boards, the PEG question will be asked here.

I will offer a personal opinion here, and that is that PEG's make it easier to keep weight on and nutrition and hydration at optimal levels for the vast majority of patients. Those things are directly correlated with not only improved healing rates and avoidance of other associated complications, but quality of life issues as well. Even on a PEG, there is no reason that SOME of your needs might not be met with oral consumption of soft foods and the drinking of liquids when possible. I agree with Gary that there are no studies that show that toughing it out without a PEG has any advantage to people in the long run. People that have dysphagia and other eating issues as well as strictures in their esophagus, do not get them from "forgetting" how to swallow. They get they as a by-product and morbidity of treatments. I have no feeling in the back of my throat and swallowing is a conscious and practiced (now second nature) experience. This is a result of surgical and radiation induced anatomical changes to my oral environment and the upper parts of my esophagus caused directly by radiation and has NOTHING to do with the fact that for about 13 months I was on a PEG.

Those that think it is some kind of "badge of honor" that they endured additional pain and discomfort for some perceived final result, are kidding themselves in my opinion. More than that, for some people PEG's are a life long end result, as the radiation damage to the nerves that control swallowing movements and peristalsis waves that move food down the esophagus, are permanently damaged, and the risk of associated aspiration is a serious threat. While I believe all would agree that not enjoying one of life's great pleasures (eating and tasting food) is a less than desirable end result, I hope it is not lost on all of you that in order to have this significant treatment induced end result, YOU HAVE TO BE ALIVE. And that in the overall scheme of things life can still be good.

Everyone, me included, is afraid of the PEG initially, but for the few complications that MIGHT come along with it, it is a valuable tool. If someone had this very minor surgical procedure to place one as a preparation for a period when they began to lose too much weight, (meaning they are defiantly not getting proper nutrition) they would not be unduly hurt by the procedure, especially in comparison to the other things that we go through to make it past this disease. And getting it once nutritional deficits are already happening, is being BEHIND the curve of taking care of your body's needs. It is time for the tough guys that are so proud of their getting through all this without one, to tone down the unsubstantiated rhetoric that this benefits patients in some measurable manner. Each patient is a unique biological entity, some will develop strictures and other issues with or without the PEG. These are morbidities of treatment and not a result of an unused autonomic function.

There are no absolutes in cancer treatment or the collateral issues associated with it. Our first job here is to not harm anyone with our advice. Please keep that in mind when posting your opinions based on personal experience. What works for one person may not work for another.

Well said Brian and easily understood.

I have read research, from the RSS feed (though I couldn't tell you the date) that stated that there are swallowing muscle exercises that can be done during treatment that do not involve actually swallowing and that these exercises might help keep those swallowing muscles from atrophying. I did these exercises when I was unable to swallow much because I had a stricture and I was told later they probably did help me maintain my swallowing muscles. For those of you concerned that people who have too much pain to swallow and are using a PEG will have swallowing problems later, instead of talking about how they might become "dependent" or making scornful "jokes" at their expense, encourage them to get treatment from a knowledgable speech pathologist as soon as possible. If someone gets this treatment in a timely manner there should be no problems with permanent loss of swallowing function due to not using the muscles although, as Brian has stated very clearly, there may be other problems from radiation that cause problems. Unfortunately, those are less controllable and have NOTHING to do with using a PEG.

Nelie

I started this thread because I heard the frustration in Mary's voice, wondering if she would ever be able to eat again. I knew that she was having discomfort, and didn't know if her lack of swallowing was pain, or fear, or perhaps some of both.

Do I think she could have done without the PEG? Absolutely not!
She definately has needed it for adequate nutritiion and hydration. And we have all been thankful that it has been there for her to use.
The docs just told her it could come out as soon as she could maintain her weight without it. They never discussed the possibility of strictures, though they did discuss decreased saliva, atrophy etc. She does currently work with a speech specialist and is doing exercises. I now realize that she could have that tube for 4 months, one year, 4 years-there really isn't any way to tell at this time.
As a dear friend, Mary has many virtues, however patience is not one of them! So, I know she is having a difficult time with the length of the recovery process. I will just be there for support, and I will be thankful that she is getting the nutrition she requires via the PEG.

Many people on this site are passionate about there positons regarding the PEG, and it has been very informative and interesting to read. But one thing we all have in common is that we want the best outcome for one another, whatever that may be. However long she needs the PEG, then that is how long she will have it- I'm just glad she is still here!

Liz

Liz,

I'm not a patient person either, in general. The recovery process was incredibly frustrating for me. She is lucky to have a friend like you as her caregiver. Keep reminding her how glad you are that she's here, that is something that can shift the perspective from what hasn't gotten back to "normal" yet to gratitude for the simple things one can enjoy. And that's an important shift.

Nelie

Most here have never had a sickness that lasts more than that of a cold or flu so we're used to feeling bad for a week or two and then recovering very quickly. Now we're hit with a Tx that lasts 6 to 7 weeks and we get progressively worse lasting 2 to 3 weeks after our tormenting Tx ends. Then we know we're in recovery because we do feel like we're getting better only to slowly realize that our recovery could be categorized as a sickness itself and this "sickness" lasts for well over a year. My point is none of us are equipped, patience wise, to handle the recovery "sickness" so we all just learn to cope with it as best we can. JMTC