Feeding Tubes- Smart, or weak
As for the tough aspect- maybe the easy way out for one going-into treatment is to not go thru the Op to get the nasty tube apparatus hooked-up inside your stomach. After all, it is easier at that time to NOT go thru the Op and get a PEG installed, rather than to go thru the Op. To me, tough is a non-issue with a PEG; however, if it is an issue- I would side that it is tougher to get one than to not. The flip-side, of course, is that treatment will likely be tougher without one, which leads us to the next issue:
Smart. Most of us agree that if one gets a PEG, it is smarter to get one before tx starts, and the body has only to deal with the C and Op, rather than to also be dealing with the chemo and rads. How many of you have had one installed during treatment, like Micktissue, Ron and a couple others I'm aware of? Shoulda had it done before. And I hearken back to my main arguement all along- with ALL of us the intake of food and liquid thru the mouth becomes an issue. And what eliminates such from being an issue? The PEG. To me, it's a matter of being smart, and helping your body get thru treatment as best it can by eliminating the obstacles treatment brings in the mouth and throat. And this is common sense.
And to every Dr who has advised his patient not to get one, and said patient landed in the hospital due to lack of hydration and Nutrition, or said patient ended-up getting one installed during treatment- HEY, Doc, you were wrong. It does amaze me that such as this is considered as "Oh, well..." considering what said patient went thru to reach the stage of needing to get the PEG put-in during treatment, or lands in a hospital.
I reckon the real question/topic is this: is the PEG the smart thing to do? Even if you didn't get one, might your treatment experience have been better if you had one to help get the water and liquid Nutrition into your body during the worst of treatment times? And, thus, might the PEG be a necessary evil the majority of H&N patients should get? And knowing the mouth and throat will be impacted during tx, shouldn't the PEG be regarded as "on the table" for most patients about to start H&N tx from their Dr's perspective?
I was not given a choice by my Onco, and got my G-tube a couple weeks before tx started. And I do not consider having a PEG as being a "tough" issue- rather, an issue of being smart.
Comments are welcome, of course...
kcass
Comments
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My .02arndog64 said:If I could go back to the
If I could go back to the beginning my husband would have the feeding tube!!
To not get one is just "vanity", in my opinion. The upside is obvious, and the downside is not based on best practice. Having said that, I can understand why people resist. It made me mad to have to get one...but I am glad I swallowed my pride and did it. I am sure it made my journey through treatment easier than it would have been. And it still SUCKED. So I guess maybe I am tough after all. Or, on second thought, toughness is not a word that I think fits us. We are called survivors, not conquerors for a reason...0 -
LOL ~ Smart, Weak or Not Prescribed.....
Here we go again...LOL.
You know my stand...doesn't have anything to do with being tough...maybe dumb or unaware, not sure.
But, in my case...my ENT which has never steered me wrong and I credit to saving my life. Did not prescribe one, he did make me aware that if things went south, the option for him to decide was always there, and I gave him that permission upfront.
If he would have prescribed it and ordered it, I would have no problem having it, no questions asked...hell, they poked, probed, prodded, inserted the port, strapped me to the table for rads and scans, shoved scopes through both orifices to check my throat and intestines (shaking hands in the middle)....so getting a PEG was not ever an issue of toughing it out, or not wanting to go through whatever... I'm going kicking and screaming, whatever was prescribed, I was in front of the line....
Sooo, that being said, I made it through and to me, with minimal pain, certainly nothing unexpected or unbearable...do I have a higher threshhold for pain...I don't think so.
It just honestly was never an issue....
Might having a PEG made it easier, I dunno and don't really care at this point. Bottom line is that everyone that has a PEG still went through the same pain that I did. Only for me, I could still take in nutrient in liquid form and any needed pain meds and water orally....
Would I recommend one, definitely for some (and I do), but not mandatory for all.... To me that's between the MD's and the patients....
If you are thin by nature, have other health problems, you are setting yourself up for failure if you don't have one....
If you are otherwise healthy it's a call made between you and your professional md's...
It's a call that I'm not qualified or justified in making for anyone other than myself...
So my stand is still, Pro PEG when needed and under certain instances, but not required for everyone.
Nothing to do with pride, vanity, toughness....it was simply not prescribed.....and my doctor made the right decision for me....he has all of the education and experience to make those decisions....
This discussion always comes off like you were either ignorant or rebellious for not having a PEG...can't simply someone not have one because their MD didn't prescribe it and that their decison was correct for that patient...we are all not cookie cut, everyone is different.
Best,
John0 -
JohnSkiffin16 said:LOL ~ Smart, Weak or Not Prescribed.....
Here we go again...LOL.
You know my stand...doesn't have anything to do with being tough...maybe dumb or unaware, not sure.
But, in my case...my ENT which has never steered me wrong and I credit to saving my life. Did not prescribe one, he did make me aware that if things went south, the option for him to decide was always there, and I gave him that permission upfront.
If he would have prescribed it and ordered it, I would have no problem having it, no questions asked...hell, they poked, probed, prodded, inserted the port, strapped me to the table for rads and scans, shoved scopes through both orifices to check my throat and intestines (shaking hands in the middle)....so getting a PEG was not ever an issue of toughing it out, or not wanting to go through whatever... I'm going kicking and screaming, whatever was prescribed, I was in front of the line....
Sooo, that being said, I made it through and to me, with minimal pain, certainly nothing unexpected or unbearable...do I have a higher threshhold for pain...I don't think so.
It just honestly was never an issue....
Might having a PEG made it easier, I dunno and don't really care at this point. Bottom line is that everyone that has a PEG still went through the same pain that I did. Only for me, I could still take in nutrient in liquid form and any needed pain meds and water orally....
Would I recommend one, definitely for some (and I do), but not mandatory for all.... To me that's between the MD's and the patients....
If you are thin by nature, have other health problems, you are setting yourself up for failure if you don't have one....
If you are otherwise healthy it's a call made between you and your professional md's...
It's a call that I'm not qualified or justified in making for anyone other than myself...
So my stand is still, Pro PEG when needed and under certain instances, but not required for everyone.
Nothing to do with pride, vanity, toughness....it was simply not prescribed.....and my doctor made the right decision for me....he has all of the education and experience to make those decisions....
This discussion always comes off like you were either ignorant or rebellious for not having a PEG...can't simply someone not have one because their MD didn't prescribe it and that their decison was correct for that patient...we are all not cookie cut, everyone is different.
Best,
John
As usual- thanks for the input.
Would you allow that Drs who flat-out said patients wouldn't get a PEG, or that said Dr doesn't believe in them; and, down the road, said patient landed in the hospital with dehydration and Nutrition issues, or things got so bad said patient had to get a PEG during tx- that the Dr was wrong/errored in his judgement?
kcass0 -
agreeSkiffin16 said:LOL ~ Smart, Weak or Not Prescribed.....
Here we go again...LOL.
You know my stand...doesn't have anything to do with being tough...maybe dumb or unaware, not sure.
But, in my case...my ENT which has never steered me wrong and I credit to saving my life. Did not prescribe one, he did make me aware that if things went south, the option for him to decide was always there, and I gave him that permission upfront.
If he would have prescribed it and ordered it, I would have no problem having it, no questions asked...hell, they poked, probed, prodded, inserted the port, strapped me to the table for rads and scans, shoved scopes through both orifices to check my throat and intestines (shaking hands in the middle)....so getting a PEG was not ever an issue of toughing it out, or not wanting to go through whatever... I'm going kicking and screaming, whatever was prescribed, I was in front of the line....
Sooo, that being said, I made it through and to me, with minimal pain, certainly nothing unexpected or unbearable...do I have a higher threshhold for pain...I don't think so.
It just honestly was never an issue....
Might having a PEG made it easier, I dunno and don't really care at this point. Bottom line is that everyone that has a PEG still went through the same pain that I did. Only for me, I could still take in nutrient in liquid form and any needed pain meds and water orally....
Would I recommend one, definitely for some (and I do), but not mandatory for all.... To me that's between the MD's and the patients....
If you are thin by nature, have other health problems, you are setting yourself up for failure if you don't have one....
If you are otherwise healthy it's a call made between you and your professional md's...
It's a call that I'm not qualified or justified in making for anyone other than myself...
So my stand is still, Pro PEG when needed and under certain instances, but not required for everyone.
Nothing to do with pride, vanity, toughness....it was simply not prescribed.....and my doctor made the right decision for me....he has all of the education and experience to make those decisions....
This discussion always comes off like you were either ignorant or rebellious for not having a PEG...can't simply someone not have one because their MD didn't prescribe it and that their decison was correct for that patient...we are all not cookie cut, everyone is different.
Best,
John
This is another instance where I should think before shooting off my mouth (or tapping my fingers...)
I apologize John.
I didn't mean you, or those who didn't have one recommended by the doc. I was talking about the folks who come on and say their doctors said to get it, but they didn't want to, then list the reasons why.
But you are right, everyone is different and someone's reasons for doing what they do aren't always simply defined. I promised myself to be more slow to judge, and I broke my promise.0 -
AdviceSkiffin16 said:LOL ~ Smart, Weak or Not Prescribed.....
Here we go again...LOL.
You know my stand...doesn't have anything to do with being tough...maybe dumb or unaware, not sure.
But, in my case...my ENT which has never steered me wrong and I credit to saving my life. Did not prescribe one, he did make me aware that if things went south, the option for him to decide was always there, and I gave him that permission upfront.
If he would have prescribed it and ordered it, I would have no problem having it, no questions asked...hell, they poked, probed, prodded, inserted the port, strapped me to the table for rads and scans, shoved scopes through both orifices to check my throat and intestines (shaking hands in the middle)....so getting a PEG was not ever an issue of toughing it out, or not wanting to go through whatever... I'm going kicking and screaming, whatever was prescribed, I was in front of the line....
Sooo, that being said, I made it through and to me, with minimal pain, certainly nothing unexpected or unbearable...do I have a higher threshhold for pain...I don't think so.
It just honestly was never an issue....
Might having a PEG made it easier, I dunno and don't really care at this point. Bottom line is that everyone that has a PEG still went through the same pain that I did. Only for me, I could still take in nutrient in liquid form and any needed pain meds and water orally....
Would I recommend one, definitely for some (and I do), but not mandatory for all.... To me that's between the MD's and the patients....
If you are thin by nature, have other health problems, you are setting yourself up for failure if you don't have one....
If you are otherwise healthy it's a call made between you and your professional md's...
It's a call that I'm not qualified or justified in making for anyone other than myself...
So my stand is still, Pro PEG when needed and under certain instances, but not required for everyone.
Nothing to do with pride, vanity, toughness....it was simply not prescribed.....and my doctor made the right decision for me....he has all of the education and experience to make those decisions....
This discussion always comes off like you were either ignorant or rebellious for not having a PEG...can't simply someone not have one because their MD didn't prescribe it and that their decison was correct for that patient...we are all not cookie cut, everyone is different.
Best,
John
I meet with my head & neck team Friday to find out my path forward (recently diagnosed NPC T4) and this is certainly one of the questions I will be asking.
My symptoms at the moment are affecting my vision in my right eye, pressure build up in my right ear and intermittent numbness on the right side of my face from 5th cranial nerve impact. To date, I have had no issue with tounge, jaw, teeth, tonsils etc. so I am unsure if PEG will be required for me.
My attitude is similar to skiffin, if my specialist tells me I need it then, no problem sign me up. If the specialist believes I don't need it, do I take his word for it? So far, I have absolute faith in my ENT specialist and the background checks I have done on him have had fantastic reports. What do you guys think?
Also while I am here, I am compiling a list of questions to ask them, so if there any others you think I should ask, please let me know
Adrian0 -
No Apology Needed Daviddavidgskinner said:agree
This is another instance where I should think before shooting off my mouth (or tapping my fingers...)
I apologize John.
I didn't mean you, or those who didn't have one recommended by the doc. I was talking about the folks who come on and say their doctors said to get it, but they didn't want to, then list the reasons why.
But you are right, everyone is different and someone's reasons for doing what they do aren't always simply defined. I promised myself to be more slow to judge, and I broke my promise.
We're all big people....and I didn't take your's or that other guy, LOL...teasing Kent personal, it's not.
I was merely giving myside of the situation.....simply that I didn't refuse one. That for me it was a good call from my MD.....I trust his decisions and he has never steered me wrong.
That's where (to me) it all comes from...having trust in what your MD's prescribe... Unfortunately, not all MD's are the same, they are as different as we.
Again,unfortunately if you have one that does make a judgement call and it's wrong, we are the ones that pay the price....
I'm not sure there is any good answer to that other than if you aren't comfortable with your MD's, seek one that you are confident in.
Best,
John0 -
Questions to Askadrian b said:Advice
I meet with my head & neck team Friday to find out my path forward (recently diagnosed NPC T4) and this is certainly one of the questions I will be asking.
My symptoms at the moment are affecting my vision in my right eye, pressure build up in my right ear and intermittent numbness on the right side of my face from 5th cranial nerve impact. To date, I have had no issue with tounge, jaw, teeth, tonsils etc. so I am unsure if PEG will be required for me.
My attitude is similar to skiffin, if my specialist tells me I need it then, no problem sign me up. If the specialist believes I don't need it, do I take his word for it? So far, I have absolute faith in my ENT specialist and the background checks I have done on him have had fantastic reports. What do you guys think?
Also while I am here, I am compiling a list of questions to ask them, so if there any others you think I should ask, please let me know
Adrian
Hi Adrian,
Here is a link to a thread just started on asking questions. There are some good ones on here that may apply to your scenario.
Questions To Ask the Doctors
As for the PEG question, I'm not sying that my answer is right for everyone, obviously it's not. But at the same time, I don't feel that everyone should have to be required to have a PEG.
Obviously that's only a question that you (more informed now) and your MD's can decide on....
John0 -
this forum made me fight for the peg!Skiffin16 said:Questions to Ask
Hi Adrian,
Here is a link to a thread just started on asking questions. There are some good ones on here that may apply to your scenario.
Questions To Ask the Doctors
As for the PEG question, I'm not sying that my answer is right for everyone, obviously it's not. But at the same time, I don't feel that everyone should have to be required to have a PEG.
Obviously that's only a question that you (more informed now) and your MD's can decide on....
John
reading everyones experiences and opinions on here made me feel very strongly to push my mother who is 107lbs to get the Peg Pre-treatment. Her rad/onc doctor advised against it but did feel that i knew my mother best and agreed.
my mother did however unfortunately experience significant pain for a full week ( this has resolved) ... her first week of radiation treatment which theoretically she would have been normal for her and out and about ..but was indeed house bound. this pain has subsided. although my mom does tell me she regrets getting it now .. hindsight is certainly 20/20 .. she does not realize that in another week or so she will be symptomatic from treatment and ALSO would have had the pain from the peg .. that would have been a recipe for disaster!
although i had a breakdown thinking i made the wrong decision .. everyones support on here has made me realize that this decision may indeed be a LIFE SAVING one. if my mother never uses it of course i will be thrilled .. but in my opinion nutrition and hydration is so vital that even one or two days of inadequate nutritional support can set you into a down spiral. to stay ahead of any lack of nutrition is in my opinion certainly the better option.
Also, the GI doctor who did the procedure did inform us that the procedure is easier and has less change of complication when done before treatment. pain, swelling, dehydration during treatment can lead to a more difficult time placing the tube. He told us that he wished more patients had it placed before treatment
i of course hope and pray that mom has as little side effects as possible.. but i must admit i cannot wait for the day when i call tell the rad.oncologist ... " told ya so "
0 -
Great post Kentbpell0402 said:this forum made me fight for the peg!
reading everyones experiences and opinions on here made me feel very strongly to push my mother who is 107lbs to get the Peg Pre-treatment. Her rad/onc doctor advised against it but did feel that i knew my mother best and agreed.
my mother did however unfortunately experience significant pain for a full week ( this has resolved) ... her first week of radiation treatment which theoretically she would have been normal for her and out and about ..but was indeed house bound. this pain has subsided. although my mom does tell me she regrets getting it now .. hindsight is certainly 20/20 .. she does not realize that in another week or so she will be symptomatic from treatment and ALSO would have had the pain from the peg .. that would have been a recipe for disaster!
although i had a breakdown thinking i made the wrong decision .. everyones support on here has made me realize that this decision may indeed be a LIFE SAVING one. if my mother never uses it of course i will be thrilled .. but in my opinion nutrition and hydration is so vital that even one or two days of inadequate nutritional support can set you into a down spiral. to stay ahead of any lack of nutrition is in my opinion certainly the better option.
Also, the GI doctor who did the procedure did inform us that the procedure is easier and has less change of complication when done before treatment. pain, swelling, dehydration during treatment can lead to a more difficult time placing the tube. He told us that he wished more patients had it placed before treatment
i of course hope and pray that mom has as little side effects as possible.. but i must admit i cannot wait for the day when i call tell the rad.oncologist ... " told ya so "
I was not even told about the PEG and becasme very weak and malnourished and a friend mentioned it. I asked the Onco (Chemo Ali) about a PEG. I really think I saw a flash of dollar signs in his eyes and he lierally said " Great idea I l'll book you in now". And he did.
I got pneumonia during the the installation. I was weak and prone to infection. I wish I knew about it earlier and had been able to get one then. The additional infection, AB's, drugs and xrays required just added to the shitfight, and in week 3-4 of Chremo and twice a day rads, it was not good period.
I consider the Doctor negligent.
Each to his own but, we definitely should be informed about this PEG prior to commencing Tx. Also it is easy to have one and not use it, than the other way around. There will alway be those that waltz through and never need the support. I think I would have died without it.
Scam0 -
Tough or weakbpell0402 said:this forum made me fight for the peg!
reading everyones experiences and opinions on here made me feel very strongly to push my mother who is 107lbs to get the Peg Pre-treatment. Her rad/onc doctor advised against it but did feel that i knew my mother best and agreed.
my mother did however unfortunately experience significant pain for a full week ( this has resolved) ... her first week of radiation treatment which theoretically she would have been normal for her and out and about ..but was indeed house bound. this pain has subsided. although my mom does tell me she regrets getting it now .. hindsight is certainly 20/20 .. she does not realize that in another week or so she will be symptomatic from treatment and ALSO would have had the pain from the peg .. that would have been a recipe for disaster!
although i had a breakdown thinking i made the wrong decision .. everyones support on here has made me realize that this decision may indeed be a LIFE SAVING one. if my mother never uses it of course i will be thrilled .. but in my opinion nutrition and hydration is so vital that even one or two days of inadequate nutritional support can set you into a down spiral. to stay ahead of any lack of nutrition is in my opinion certainly the better option.
Also, the GI doctor who did the procedure did inform us that the procedure is easier and has less change of complication when done before treatment. pain, swelling, dehydration during treatment can lead to a more difficult time placing the tube. He told us that he wished more patients had it placed before treatment
i of course hope and pray that mom has as little side effects as possible.. but i must admit i cannot wait for the day when i call tell the rad.oncologist ... " told ya so "
I think the one excuse for not getting the tube that bothers me is the person who says they have a lot of extra weight they can afford to lose. To me it's not about losing weight, it's about the nutrition your body needs daily and the hydration.
Anyone who made it through treatment, especially if they had surgery, without the tube amazes me. I had it much easier than many here as I didn't have any surgery but I know I would never have survived without the tube.0 -
bpell ~ Right Decisionbpell0402 said:this forum made me fight for the peg!
reading everyones experiences and opinions on here made me feel very strongly to push my mother who is 107lbs to get the Peg Pre-treatment. Her rad/onc doctor advised against it but did feel that i knew my mother best and agreed.
my mother did however unfortunately experience significant pain for a full week ( this has resolved) ... her first week of radiation treatment which theoretically she would have been normal for her and out and about ..but was indeed house bound. this pain has subsided. although my mom does tell me she regrets getting it now .. hindsight is certainly 20/20 .. she does not realize that in another week or so she will be symptomatic from treatment and ALSO would have had the pain from the peg .. that would have been a recipe for disaster!
although i had a breakdown thinking i made the wrong decision .. everyones support on here has made me realize that this decision may indeed be a LIFE SAVING one. if my mother never uses it of course i will be thrilled .. but in my opinion nutrition and hydration is so vital that even one or two days of inadequate nutritional support can set you into a down spiral. to stay ahead of any lack of nutrition is in my opinion certainly the better option.
Also, the GI doctor who did the procedure did inform us that the procedure is easier and has less change of complication when done before treatment. pain, swelling, dehydration during treatment can lead to a more difficult time placing the tube. He told us that he wished more patients had it placed before treatment
i of course hope and pray that mom has as little side effects as possible.. but i must admit i cannot wait for the day when i call tell the rad.oncologist ... " told ya so "
With your mother only weighing in at 107, you definitely made the right decision. Myself and others re-enforced that with you....
You were definitely well informed and you used that information wisely.
Best,
John0 -
nutrition and hydration are the goal of a PEGGlenna M said:Tough or weak
I think the one excuse for not getting the tube that bothers me is the person who says they have a lot of extra weight they can afford to lose. To me it's not about losing weight, it's about the nutrition your body needs daily and the hydration.
Anyone who made it through treatment, especially if they had surgery, without the tube amazes me. I had it much easier than many here as I didn't have any surgery but I know I would never have survived without the tube.
While I'm happy to hear of anyone who successfully completes treatment, PEG or no PEG, I agree with Glenna that nutrition and hydration are the reasons one has a PEG installed.
My husband had one put in place prior to treatment, was able to eat and drink the entire time, consuming about 3500 calories of real food and beverage daily and still lost about forty pounds total and he didn't have it to lose. He has now, 10 months post-treatment, regained about twenty pounds.
Even though he never had to use the PEG (we flushed it daily to keep it available) Jim said the knowledge it was there and available if he needed it was enough for him to say he would get one if we ever had a repeat need for one.
If you will, consider it a backup system.
And as others have said, you don't want to even take a chance on starting the downward spiral of not eating and drinking and swallowing.0 -
JohnSkiffin16 said:bpell ~ Right Decision
With your mother only weighing in at 107, you definitely made the right decision. Myself and others re-enforced that with you....
You were definitely well informed and you used that information wisely.
Best,
John
Your first reply highlights one of the reasons for this thread- you and your Dr. talked of the PEG, early-on (that's in the paragraph with the questions). I just wonder how many others had it on the table with their Drs before tx started. As in all cases, your Dr is supposed to know the specifics of your C and the tx planned, and your Dr made the right call. But I wonder how many other Drs ho-hum the PEG matter, because they don't realize how bad it can get for some of us; and, thus, do wrong by their patients. That is the real issue that, I think, Sweet and I have with those who speak of a PEG in boogety-boogety terms. I consider the PEG to be a matter of critical importance for many in H&N, though not all, to get thru it all as best they can.
The "smarts" thing is to stress the benefits of a PEG eliminating the involvement of the problem area(s) of ingestion. The "vanity" thing is to tough-crowd ridicule those that wanna think they're tough by not getting a PEG, then tell us they woulda been smarter if they had by describing what they went thru. That has nothing to do with you, John, as you are most humble in your self-appraisal. And, the focus of discussion should rightly be on how beneficial, or essential, a PEG can be for one in H&N tx, and beyond.
Believe
kcass0 -
My thoughts...
Just skimming the posts here. A G-Tube is something a bit different than the PEG. G-Tube takes a more invasive surgery to have installed and removed, and requires a bit longer recovery time, from what I've read.
Up front, my rads oncologist told me I would not need the PEG, even though I was going to be blasted to the max on both sides. Afterwards, my chemo oncologist told me that I had personally changed his philosophy, and that from here on out, he would be recommending a PEG up front to all patients with mets to lymph nodes on both sides of the neck.
Regarding getting the PEG, I lasted four weeks into my eight week rads treatment regime and through two rounds of cisplatin chemo. I then felt so crappy that it got really really hard to keep up the nutrition and hydration. I demanded that the PEG be installed immediately. Fortunately, they referred me to a Gastro doc who could do so. They did it outpatient in one afternoon, and I was using it by the end of the same day. Worked like a charm.
Now the downside; the PEG is typically clamped really tight when installed, and you go back in to have it loosened up a couple of days later. When I went back in, they weren't happy with the reddened skin around the clamp, and put me on a liquid antibiotic that targeted skin infections, as a prophylaxis. The antibiotic made me violently photo-sensitive which resulted in some serious second-degree radiation burns popping up almost instantaneously. They pulled me off the antibiotice after about a day and a half, but then I had to take a week long hiatus from my radiation treatments, in order to let my burns heal up. Doctors didn't seem to worried about my taking a break, but I was pretty freaked out about it for a while. I did need the break, though. That, and my PEG, then enabled me to get all the way through the eight weeks of radiation with no further issues.
In retrospect, would I get the PEG up front? I don't know. It wouldn't have been a serious issue to get it mid-treatment, WITHOUT the antibiotics.
Deb0 -
"Vanity, thy name is. . ."Kent Cass said:John
Your first reply highlights one of the reasons for this thread- you and your Dr. talked of the PEG, early-on (that's in the paragraph with the questions). I just wonder how many others had it on the table with their Drs before tx started. As in all cases, your Dr is supposed to know the specifics of your C and the tx planned, and your Dr made the right call. But I wonder how many other Drs ho-hum the PEG matter, because they don't realize how bad it can get for some of us; and, thus, do wrong by their patients. That is the real issue that, I think, Sweet and I have with those who speak of a PEG in boogety-boogety terms. I consider the PEG to be a matter of critical importance for many in H&N, though not all, to get thru it all as best they can.
The "smarts" thing is to stress the benefits of a PEG eliminating the involvement of the problem area(s) of ingestion. The "vanity" thing is to tough-crowd ridicule those that wanna think they're tough by not getting a PEG, then tell us they woulda been smarter if they had by describing what they went thru. That has nothing to do with you, John, as you are most humble in your self-appraisal. And, the focus of discussion should rightly be on how beneficial, or essential, a PEG can be for one in H&N tx, and beyond.
Believe
kcass
tough?
Maybe I've missed a few posts, because I'm not sure where that is coming from. This is the kind of thing that you can't have any kind of definitive answer on; so much of the information is anecdotal. Our doctor strongly believes that PEG-less was best and only a few of his patients needed one. He also was clear that - in the long run - it didn't make much difference, but strongly felt that his non-PEG patients recovered "normal" eating ability sooner. I am also certain that the entire team is very aware of how hard treatment is on their patients; you can't fake that kind of empathy and caring.
It worked out for us, and I tend to now agree with his opinion (before we had the discussion, I was totally pro-PEG). I try to hang back with that opinion unless someone is clearly leaning towards no-PEG and wants support - we had a week or so of second-guessing about it and I want to be there for anyone else in a similar position.
Obviously, someone fired the first shot and made some kind of "PEG users are wusses" statement - I either missed it or ignored it. However, I'm not sure a thread titled "Smart, or weak" is any less inflammatory.
And maybe I just threw gasoline on the fire - sorry.0 -
Thanks-D Lewis said:My thoughts...
Just skimming the posts here. A G-Tube is something a bit different than the PEG. G-Tube takes a more invasive surgery to have installed and removed, and requires a bit longer recovery time, from what I've read.
Up front, my rads oncologist told me I would not need the PEG, even though I was going to be blasted to the max on both sides. Afterwards, my chemo oncologist told me that I had personally changed his philosophy, and that from here on out, he would be recommending a PEG up front to all patients with mets to lymph nodes on both sides of the neck.
Regarding getting the PEG, I lasted four weeks into my eight week rads treatment regime and through two rounds of cisplatin chemo. I then felt so crappy that it got really really hard to keep up the nutrition and hydration. I demanded that the PEG be installed immediately. Fortunately, they referred me to a Gastro doc who could do so. They did it outpatient in one afternoon, and I was using it by the end of the same day. Worked like a charm.
Now the downside; the PEG is typically clamped really tight when installed, and you go back in to have it loosened up a couple of days later. When I went back in, they weren't happy with the reddened skin around the clamp, and put me on a liquid antibiotic that targeted skin infections, as a prophylaxis. The antibiotic made me violently photo-sensitive which resulted in some serious second-degree radiation burns popping up almost instantaneously. They pulled me off the antibiotice after about a day and a half, but then I had to take a week long hiatus from my radiation treatments, in order to let my burns heal up. Doctors didn't seem to worried about my taking a break, but I was pretty freaked out about it for a while. I did need the break, though. That, and my PEG, then enabled me to get all the way through the eight weeks of radiation with no further issues.
In retrospect, would I get the PEG up front? I don't know. It wouldn't have been a serious issue to get it mid-treatment, WITHOUT the antibiotics.
Deb
Deb, as your Dr appears to realize the difference a PEG can make. And yes, I got a G-tube.
Dr. Mary- it seems your Dr kinda lumps all H&N patients together, by what you state. And I kinda think that's wrong, as most will likely agree. We are all different- where our C is, and how advanced, and what kinda C we have, as well as the specifics of the treatment we get. I seem to remember your saying Doug had three really bad weeks with almost no Nutrition, but did get hydrated. Might his treatment experience have been less extreme to the bad if he'd had a PEG and had no obstacles from the lips to the stomach? Or was his only problem nausea? More to the point- did his throat condition make the getting of Nutrition and water so difficult that he suffered relatively needlessly for those three weeks, compared to how he woulda suffered if he was getting the Nutrition and water? If you answer Yes to the last question, then perhaps he woulda been smarter to get the PEG, and not suffer so much, or run the risk of the problem landing him in the hospital.
Again, like Sweet, I was not given an option. And, yes, my Onco put me on Morph at the start of week #2, without my asking for it. My Profile page kinda explains why. The real issue is how many fall into the borderline of a PEG making a definite Positive in getting thru treatment as best one can, and how Drs might be correct in deciding on the side of caution to better help their patients get thru treatment with the PEG path that is unobstructed by the damaged mouths and throats. Having lived the PEG experience for 15-months, I am of the opinion that all who are borderline with their specifics should opt for the PEG, as many Doctors seem to do.
kcass0 -
Oh boy
I guess this is the hot topic on the H&N board. I wonder what it is on the other boards. It's like talking about politics or religion.
When I was first told about my cancer and about what my treatment would entail I gotta admit I was most freaked out by the idea of the PEG. Not the chemo, not the radiation, not even the cancer; the PEG. And it wasn't vanity, it was just that the idea of the PEG seemed so bizarre and like it was going to be such a major pain in the ****. It was and it was. And then it wasn't and it wasn't.
I was determined to not use mine and to eat/drink no matter what. That lasted all of 2 weeks until I ended up with a huge sore on my tongue and one on my throat that no amount of lidocaine or Dilaudid or morphine could make me forget about. That was it, only 2 sores but they were enough to require me to use the PEG. If I would have been given a choice I wouldn't have had it put in. Then I would have had it put in 2 weeks deep into radiation and that would have really sucked. Or I would have went however many days without nutrition and might not have finished radiation on schedule. Sucky also. In hindsight; my doc was right. My choice would have been bad for me.
I honestly don't understand why a doc wouldn't require one to be put in prior to radiation. My guess is that those docs are "toughies" themselves and think we should be able to tolerate more than we sometimes can. Or just ignorance and a willingness to gamble with somebody else's experience/life. Has anyone ever had a doc who underwent radiation to the head or neck? Is it possible to understand the pain from something you've never experienced? From what I've heard about childbirth the answer is no. I've also heard the "don't want to lose the ability to swallow" argument. How many people with the PEG lost their ability to swallow? I didn't lose mine. Is this really a valid argument? Even if it was true; are we to suffer horrible pain so we don't have to relearn how to swallow after treatment? Again; gambling is easy when it's not your pain.
In thinking about the trusting our docs thing; we either should trust our docs or we should get one that we do. But; our docs don't always know as much as the whole lot of us put together. A good example is L'hermitte's Syndrome. How many of our docs had heard of this thing that almost all of us experience? Isn't it possible that we might actually know more about some facets of H&N treatment than our docs do because our combined experience is so much more? I've found this to be true and I've found that for the most part we as a group would recommend getting a PEG installed prior to treatment. Are there people who will make it without one? Plenty have. Is that a good reason to gamble? I personally don't think so.
By the way; I'm in the 1% that had complications. My digestive system shut down, causing the most intense pain of all of treatment or cancer. I was hospitalized for 4 days waiting for my system to come back online. I lost 15 pounds during that time. And still I recommend the PEG.
Thanks Kent for bringing this up in a post where we can just talk about it and share our experiences. This might be helpful on the superthread as it is a common question the new ones have.
Whatever your thoughts on the PEG; God bless you and your fight.
Bob0 -
A perspective
When I woke from my head/neck cancer surgery, a 15 hour ordeal followed by four days of induced coma, I had a tube in place. I don't remember being asked whether I wanted it or not, but, then, there is much I do not remember about that time, as you might expect.
I find that one of the common problems in discussion of the tube concerns the type of tube, where it is/was inserted and how it is/was inserted. What I call a PEG tube (and I had one for more than four years), is not what others call a PEG tube, apparently. Mine was inserted into my stomach, anchored by a balloon in said stomach filled with saline or some such, and included a nifty toggle switch that I could turn into the ON position, if you will, if I was sick and wanted to avoid puking through my nose and mouth.
True, the balloon deflated every year or so, but if I got to the ER in time (and I did) they did not have to send me back into surgery. The ER folks would insert a temp tube that would hold until I got an appt with either ENTMan or GI Joe for a permanent (year, anyway) replacement.
None of this was painful, I assure you, and you can be further assured that I am allergic to pain.
Here are my personal stats:
When I went in for the head/neck cancer surgery along with the subsequent radiation and chemo, I weighed 215 pounds. I was, frankly, a heart attack waiting to happen, but still, only about 40 pounds over my optimal weight.
Following the above, I weighed in at 145. That is, by my computations, a 70 pound less in less than six months, a dramatic loss, and that was WITH the tube.
With the tube, and eating what I could (I would never give up trying to eat whatever I could all along the way), I got back up to 165.
Then came lung cancer.
I dropped back down to 143 as a result of surgery, complications, another surgery, and then chemo.
With the tube still in place, I picked that back up without a problem, getting back to 165, nearly what the docs and I thought was a sound, healthy weight.
Year after year, though, the tube would fall out, and I would hustle into the ER for the replacement. This happened for four years. During the time of the fourth tube, I was eating a lot better, or so I thought, and while I was in bed doing something I REALLY enjoy (and I was NOT alone!) my tube came out again.
My wife suggested that if we were going to replace my tube, we needed to hustle to the ER immediately and I, well, I said I didn't need a new one.
I weigh 135 pounds.
135 pounds.
The responses to this post have been great. It is indeed a personal thing, it is indeed dependent on individual needs. But some folks need it and should not be concerned about vanity or toughness but about living. Actually, in fact, weighing 135 pounds can make you look a lot older than you really are when you get right down to it.
Take care.0 -
Of Course...Kent Cass said:John
As usual- thanks for the input.
Would you allow that Drs who flat-out said patients wouldn't get a PEG, or that said Dr doesn't believe in them; and, down the road, said patient landed in the hospital with dehydration and Nutrition issues, or things got so bad said patient had to get a PEG during tx- that the Dr was wrong/errored in his judgement?
kcass
But that's not your original concept for the discussion.....your focus was on the patient's decision not to have one, not from the MD's unwillingness to prescribing it.
In that scenario the MD would be completely wrong....no good MD (I presume) would ever be so narrow minded to say he didn't believe in them, or deny a patient from getting one....
To me that's just a case of a narrow minded uneducated or stubborn MD, no place in this day and age of modern technology and experiences....
I presume we are speaking of actual Professional Medical Doctors ~ DR of course.....
JG0
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