When is it time to give in and get the peg?
Comments
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AgreedSkiffin16 said:Who Decided
Not to be insensitive, but who decided not to have a PEG?
If it were the patient or family, it defintely was a bad decision. If it were the MD's why would it have gone to the point of no intervention? There is more than likely more to that story than what was told.
My position, and one that I'm not trying to advocate for either not having the PEG or having the PEG....is simply that not everyone must have one to make it through and survive.
I'm not qualified to make that call, I can only give my experience, as should everyone else in my opinion.
I don't want anyone making a decision to not have a PEG based on my comments, it's their decision and should be made from what their MD's recommend.
To me everyone is entitled to voice their experience. Other than that I don't feel we have the right or experience to say it should be mandatory.
If the MD's say you need it, I got it...
JG
I don't think John was making weight as a deciding factor, and I must admit (!!!) he is one of the reasons I have modified my position on the PEG matter. John and I, and likely many others, believe it is a decision best left to the informed Patient, and the C med team that knows all the specifics involved in the individual case- they are the only ones qualified to make this decision on whether or not to get the PEG.
I used-to refer to myself as the "PEG advocate," and used to think it should be mandatory, but make no such claim anymore. For some of us who had PEGs, quite frankly, it might be hard to figure why anyone would not get one, considering what the PEG does in bypassing the problem areas of mouth and throat for ingesting Nutrition. Thing is, though, the severity of the physical damage done by treatment varies in the range of extremes we all are aware of. And for someone like me, who was told I had no choice in this matter by my Onco, and quickly realized why, it has been a challenge to see how anyone could get thru H&N without a PEG. But John and a few others are proof it can be done in some cases, and rather well.
And, thus, the PEG should be left as "Optional," for our discussions, and the important thing is that we get the word out there for new Patients that a PEG is something they should discuss with their C med team- that's what the PEG issue is really about.
kcass0 -
Just disagreeingSkiffin16 said:Weight Issue
I nor anyone else is advocating the PEG as a diet measure, or using it as an argument for not getting the PEG, sorry if that's all you got out of my post, not my intent......
My comments concerning weight are, if you are 90# going in, you definitely should consider a PEG....if you are of appropriate weight or over weight you aren't as apt to starve to death due to lack of nutrition......and the MD's make the decision.
Do you feel you know more, have more medical knowledge and experience. Are you going to be deciding which chemo drugs you are going to have or not...which course of treatment is best for you... To me that is basically what you are saying and that no matter what your MD's are telling you or not concerning the PEG (the new forum members), forget them...I know better....
To me and in my opinion, I feel the MD's know best course of treatment.
Why does this have to constantly be reduced to a pissing contest and that your opinion or experience is the best for all...
Simply put, it's not...., there is no "One size fits all".
I'm not going to stop commenting my experience (I'm not posting opinion, just my expereince) on these posts and simply let it go to the point that it's interpreted that everyone must or should be required to have a PEG.
Some people can get through treatment just fine without a PEG.
John
Never did say my opinion or experience was best for all. Wouldn't expect you to stop commenting or posting your experience. Truthfully I think your comments about the PEG have the potential to cause someone harm as you are a man of influence on this board and I find myself trying to balance it out in the hopes that most would get the PEG and be spared the pain of either having it put in midway through treatment, recovering slower than they could, having treatment delayed or dying of malnutrition. I respect you and your heart for helping others. In the matter of PEG or no PEG I think your comments and opinions are dangerous. I will continue to express my opinions whether it pisses you off or not. It is unfortunate that it does so as we have both been through too much to let disagreements cause such anger.
AB0 -
My Turnadventurebob said:Weight
I'm just gonna have to disagree completely with the weight argument. Weight should have nothing to do with getting a PEG or not. The PEG's main purpose is not to keep weight stable but rather to keep a steady flow of nutrients and calories going into the body. It is a plus that it stabilizes weight but not the main purpose. Overweight people do not have an excess of nutrients in their body to be used for strength and healing during treatment. They have an excess of fat. They are perhaps more in need of solid nutrition than the people of healthy weight or even underweight. As Ratface mentioned; cancer and cancer treatment is not a weight loss program. Everyone receiving cancer treatment will need constant nutrients and calories going into their body or they will suffer horribly. The PEG is for people who aren't able to get those nutrients in by mouth. The real question is: "Is there a chance that I won't be able to get the necessary nutrients and calories in by mouth at some point in my treatment and would I rather have the PEG put in now just in case or when I am already nutritionally compromised and beaten down and my immune system is shot?" How much do you like to gamble? Or rather; how much does your doctor like to gamble with your health?
AB
Like tag team wrestling, my turn to jump in the ring.
Indeed, as you say, the purpose of the PEG is to get nutrients in if you can't do it by mouth. Nevertheless, a number of us have proved that in not every case is the patient unable to get nutrified despite what is done to us. Unlike Skiffin, I had the whole shebang including nine weeks of rads and a couple of chemos. I don't need to tell you that this was not fun. However, with my wife's kind assistance (and the occasional kick in the butt), I was able to maintain the chewing and swallowing function right on through. The weight I lost was because of the nausea not the inability to get things down.
Frankly, I do not think that punching a hole in the stomach and keeping it open for months on the chance it might somehow prove useful one day, is wise insurance. Being vigilant and keeping close track of nutrients and blood components is much more important.
All of cancer treatment is a gamble, isn't it? My rads and chemo were playing the percentages, pretty good ones versus other kinds of treatments, of course. I think that as long as they were seeing me every day and testing me regularly, as they were, the docs were not gambling unreasonably. And, since the PEG decision is ultimately only that of the patient (and maybe caregiver), then it isn't truly the doctors' gamble, is it? (This leaves out the scenario of waking up drugged in a bathtub, etc.)
So, once again, I think that the experience of a number of us proves that NOT EVERYONE ultimately needs a PEG, though most do. However, everyone should be advised of the pros and cons of getting this operation.
I suppose that we are all tired of this by now so I promise not to post any more... to this thread anyway. Doug0 -
I recomend getting the PEGCajunEagle said:Debbie.....This is sooooooo very
important for Jim to WORK ON THOSE SWALLOWING EXERCISES. He has to do them. HAS TO. If he expects to have in shape or form of normalcy later in life, he has to get back the ability to swallow. It's important to set up a daily time schedule for when to work on those excercises. My wife made sure that I did mine 4 times a day, along with other activities to attempt to get me stronger after the treatment was completed. Being that my treatment was completed in June of 09, I began swallowing treatment in August and worked daily on the techniques till the end of November. My final barium test was right around Thanksgiving of that year, and did follow up appointments with the Speech Pathologist until the following February. Those Barium test were highly motivating for me to be able to swallow.........just plain hated doing them. Yuck !
Larry
If your Dr recomends a Peg than I recomend getting the PEG as early in the treatment as possible, if you wait you might be to weak to go through with it and if you start Chemo and Rad. it can cause your blood counts to drop below a safe range for the procedure. Its just good insurance to have it if you need it. Eat as long as you can and hopefully you can eat all the way through and maintain your health, some can but most cant and need the tube thats why its highly recomended. I refused it and rejected in every way, it just creeped me out to see it but I have to say it saved me. I lost 25 lbs before I gave in and used it. I ended up getting a flo pump and that made it easy to maintain weight, I just hook it up and let it run while I sleep or just resting. I couldnt keep up putting it in manually with out loosing a couple of pounds a week. No matter what keep swallowing even if its a dry swallow or you could loose your ability and really be in trouble.0 -
To PEG or not to PEG is
To PEG or not to PEG is clearly a matter of situation. In my Fathers case, his throat swelled up in week 2 of his radiation and chemo treatments. Now he had the PEG before he started any of his treatments simply as a "Precautionary " measure. The Specialist straight up told us that more than likely, this would happen, (meaning the swelling of the throat and toungue) and that he probably wouldn't be able to swallow early on in the treatments. He told my father that it would probably be a good idea to get it befor treatments, so it would have time to heal up and not be sore at the same time he was feeling nautious and having severe toungue and throat pain. Turns out, that the specialist and nutritionist were correct and it has turned out to be a life saver, in my fathers case. Not every case is like this, nor does everyone have the same treatments or reactions to the radiation and chemo. On a lighter note, my fathers insurance company is providing this nutrition liquid to go in his PEG. He puts 10 to 12 cans a day in. Just though I would throw that out there in case any of you are paying out of pocket for glucerna, boost or juven.
Take Care All
Jason0 -
Come onGoalie said:My Turn
Like tag team wrestling, my turn to jump in the ring.
Indeed, as you say, the purpose of the PEG is to get nutrients in if you can't do it by mouth. Nevertheless, a number of us have proved that in not every case is the patient unable to get nutrified despite what is done to us. Unlike Skiffin, I had the whole shebang including nine weeks of rads and a couple of chemos. I don't need to tell you that this was not fun. However, with my wife's kind assistance (and the occasional kick in the butt), I was able to maintain the chewing and swallowing function right on through. The weight I lost was because of the nausea not the inability to get things down.
Frankly, I do not think that punching a hole in the stomach and keeping it open for months on the chance it might somehow prove useful one day, is wise insurance. Being vigilant and keeping close track of nutrients and blood components is much more important.
All of cancer treatment is a gamble, isn't it? My rads and chemo were playing the percentages, pretty good ones versus other kinds of treatments, of course. I think that as long as they were seeing me every day and testing me regularly, as they were, the docs were not gambling unreasonably. And, since the PEG decision is ultimately only that of the patient (and maybe caregiver), then it isn't truly the doctors' gamble, is it? (This leaves out the scenario of waking up drugged in a bathtub, etc.)
So, once again, I think that the experience of a number of us proves that NOT EVERYONE ultimately needs a PEG, though most do. However, everyone should be advised of the pros and cons of getting this operation.
I suppose that we are all tired of this by now so I promise not to post any more... to this thread anyway. Doug
This isn't a wrestling match or a pissing contest. This is a response to a caregiver who's concerned that her husband isn't getting the nutrition that he needs. If his doc would have insisted the tube be put in PRIOR to treatment we wouldn't even be having this discussion, she wouldn't be concerned and he wouldn't be suffering. It doesn't matter that you or John made it without the PEG. This man clearly needs it and is most likely going to have it installed while he's not at his strongest. How is the fact that you and John made it through treatment without a PEG helpful to this man or his caregiver? Would you suggest that he keep trying to eat and maybe make it as you did? For someone contemplating chemo and rads would it be helpful to hear from the 1 out of maybe 10,000 that survived cancer without chemo and rads (just throwing a number out there)? Please consider the impact your comments and opinions may have on the person or caregiver in the thick of it. We all have that responsibility as survivors.
Respectfully,
AB0 -
Again your Opinionadventurebob said:Just disagreeing
Never did say my opinion or experience was best for all. Wouldn't expect you to stop commenting or posting your experience. Truthfully I think your comments about the PEG have the potential to cause someone harm as you are a man of influence on this board and I find myself trying to balance it out in the hopes that most would get the PEG and be spared the pain of either having it put in midway through treatment, recovering slower than they could, having treatment delayed or dying of malnutrition. I respect you and your heart for helping others. In the matter of PEG or no PEG I think your comments and opinions are dangerous. I will continue to express my opinions whether it pisses you off or not. It is unfortunate that it does so as we have both been through too much to let disagreements cause such anger.
AB
You're not just disagreeing, you're slamming me....
How in the world could you derive that my comments on my experience could be mistaken to cause harm. When every time that I give my experience, I never endorse not getting a PEG. In fact I endorse the PEG in many posts, and state that many on here swear by it. I don't add anything to suggest I don't endorse it, I just state that it isn't absolutely 100% a must that everyone should have it.
What's your opinion on having all of your teeth pulled before radiation because more than likely you'll have problems down the road, so yank them out?
At what point do we stop second guessing our MD's.
That's always where our communication falls apart, you feel that everyone should get it for their own good, I don't agree. If I am a man on influence then my suggestion is and has been to follow your MD's advice and communicate with them.
Out of curiosity, how was the PEG presented to you? Were you told that you had to get it, was it mandatory and you wouldn't survive treatment without it. Were you given a choice....did you refuse it, then decide to have it later...did you follow the recommendation of your MD? Did you insist on having it though he didn't recommend it?
It also seems that I was given a choice and refused it, or that's something that is thrown out as a comparison to my experience. That's also not the case...if you are recommended to have a PEG or any procedure and you don't or you reject it to the last minute. How is that anyone's fault other than the one that has refused it.... Do we only choose to be treated on our terms and what suits us....if so, why even go to the MD?
I am open to having the PEG if recommended by the MD, you are not open to the fact that some patients do just as well with out a PEG.
To state that my comments or posts are dangerous is just being narrow minded and uncompromising, to me again taken as your way is the only right way.
You say that the man clearly needs a PEG, how do you know this....you can't speak for him. She is asking for opinions on the when is the right time, as that there is no choice in the matter...wonder where that idea came from? I can't say that he does or doesn't....
"When is it time to give in and get the peg:" When the MD tells you..., or you decide that you can not tolerate the treatment without one and need help.
I don't fully know his condition or what he is or isn't capable of, nor do you. Can you 100% guarantee that any of the symptoms she describes will be eliminated with a PEG and with no complications...?
I had all of his symptoms, but could still get in the nutrition that I needed. Others here had the same, less or more and needed the PEG. I cannot tell you what that difference is, I can only say that everyone is different.
I don't care if you do or don't have a PEG. Everything that she describes is normal for the time frame. I don't know why their MD is against the PEG, that's something that they should be asking their MD.
I'm not a MD and don't prescribe treatment.
And like Doug, I'm done with this post, so you can get in the last word and then this post can die a slow miserable death.....
Doug you said,"Unlike Skiffin, I had the whole shebang including nine weeks of rads and a couple of chemos."
Not sure what you think I had for treatment, but....
I had nine weeks of chemo in three week cycles (Cisplatin, Taxotere and 5FU), that followed with seven weeks of concurrent weekly chemo (Carboplatin) and 35 daily injections in the stomach of Amifostine just prior to 35 sessions of rads. So I feel I also had the whole shebang. I did not have a neck dissection, but did have the tonsils removed prior to all of the chemo and rads.
Kent "the PEG should be left as "Optional," for our discussions, and the important thing is that we get the word out there for new Patients that a PEG is something they should discuss with their C med team- that's what the PEG issue is really about.
I agree totally....
John0 -
I am not sure, just that itSkiffin16 said:Who Decided
Not to be insensitive, but who decided not to have a PEG?
If it were the patient or family, it defintely was a bad decision. If it were the MD's why would it have gone to the point of no intervention? There is more than likely more to that story than what was told.
My position, and one that I'm not trying to advocate for either not having the PEG or having the PEG....is simply that not everyone must have one to make it through and survive.
I'm not qualified to make that call, I can only give my experience, as should everyone else in my opinion.
I don't want anyone making a decision to not have a PEG based on my comments, it's their decision and should be made from what their MD's recommend.
To me everyone is entitled to voice their experience. Other than that I don't feel we have the right or experience to say it should be mandatory.
If the MD's say you need it, I got it...
JG
I am not sure, just that it was finally decided to put it in and he died from malnutrician before they could.
I agree that the doctors opinion should be taken in consideration, but remember they are human and make mistakes sometimes. My mantra is, get all the info and experiences of others you can and then pray for guidance. The patient makes the ultimate decision so make an informed one. Only they know what is best for them. We all are uniquely made so each decision is unique.
Blessings
Deb0 -
Doing it againJason1111 said:To PEG or not to PEG is
To PEG or not to PEG is clearly a matter of situation. In my Fathers case, his throat swelled up in week 2 of his radiation and chemo treatments. Now he had the PEG before he started any of his treatments simply as a "Precautionary " measure. The Specialist straight up told us that more than likely, this would happen, (meaning the swelling of the throat and toungue) and that he probably wouldn't be able to swallow early on in the treatments. He told my father that it would probably be a good idea to get it befor treatments, so it would have time to heal up and not be sore at the same time he was feeling nautious and having severe toungue and throat pain. Turns out, that the specialist and nutritionist were correct and it has turned out to be a life saver, in my fathers case. Not every case is like this, nor does everyone have the same treatments or reactions to the radiation and chemo. On a lighter note, my fathers insurance company is providing this nutrition liquid to go in his PEG. He puts 10 to 12 cans a day in. Just though I would throw that out there in case any of you are paying out of pocket for glucerna, boost or juven.
Take Care All
Jason
I hope I never have to take treatment again, but if I did I would consult my Doc about getting the PEG as the last two times in treatment I did it with out a PEG and lost so much weight I look like I had skin pulled over my bones. For some reason the doc’s here in Lafayette don’t believe in using the PEG tubes. I am not sure why as I did not find out about them till coming on this forum. CSN what a great place for information is what I always say.
Thanks
Hondo0 -
Larry,CajunEagle said:Debbie.....This is sooooooo very
important for Jim to WORK ON THOSE SWALLOWING EXERCISES. He has to do them. HAS TO. If he expects to have in shape or form of normalcy later in life, he has to get back the ability to swallow. It's important to set up a daily time schedule for when to work on those excercises. My wife made sure that I did mine 4 times a day, along with other activities to attempt to get me stronger after the treatment was completed. Being that my treatment was completed in June of 09, I began swallowing treatment in August and worked daily on the techniques till the end of November. My final barium test was right around Thanksgiving of that year, and did follow up appointments with the Speech Pathologist until the following February. Those Barium test were highly motivating for me to be able to swallow.........just plain hated doing them. Yuck !
Larry
he is doing exercises
Larry,
he is doing exercises and drinks all his water by mouth which helps keep the working.
debbie0 -
Hmmmadventurebob said:John
We're like Obama and Boehner. Just trying to help the people. I'll let you figure out which guy you are.
AB
Is there a winner in that comparison...
BTW, I presume you meant President Obama, The President of the United States...
Actually I hope we are in a better group of choices.... I don't think either of them are as much concerned for the well being of their audience as we.
JG0 -
Sorry, SkiffSkiffin16 said:Again your Opinion
You're not just disagreeing, you're slamming me....
How in the world could you derive that my comments on my experience could be mistaken to cause harm. When every time that I give my experience, I never endorse not getting a PEG. In fact I endorse the PEG in many posts, and state that many on here swear by it. I don't add anything to suggest I don't endorse it, I just state that it isn't absolutely 100% a must that everyone should have it.
What's your opinion on having all of your teeth pulled before radiation because more than likely you'll have problems down the road, so yank them out?
At what point do we stop second guessing our MD's.
That's always where our communication falls apart, you feel that everyone should get it for their own good, I don't agree. If I am a man on influence then my suggestion is and has been to follow your MD's advice and communicate with them.
Out of curiosity, how was the PEG presented to you? Were you told that you had to get it, was it mandatory and you wouldn't survive treatment without it. Were you given a choice....did you refuse it, then decide to have it later...did you follow the recommendation of your MD? Did you insist on having it though he didn't recommend it?
It also seems that I was given a choice and refused it, or that's something that is thrown out as a comparison to my experience. That's also not the case...if you are recommended to have a PEG or any procedure and you don't or you reject it to the last minute. How is that anyone's fault other than the one that has refused it.... Do we only choose to be treated on our terms and what suits us....if so, why even go to the MD?
I am open to having the PEG if recommended by the MD, you are not open to the fact that some patients do just as well with out a PEG.
To state that my comments or posts are dangerous is just being narrow minded and uncompromising, to me again taken as your way is the only right way.
You say that the man clearly needs a PEG, how do you know this....you can't speak for him. She is asking for opinions on the when is the right time, as that there is no choice in the matter...wonder where that idea came from? I can't say that he does or doesn't....
"When is it time to give in and get the peg:" When the MD tells you..., or you decide that you can not tolerate the treatment without one and need help.
I don't fully know his condition or what he is or isn't capable of, nor do you. Can you 100% guarantee that any of the symptoms she describes will be eliminated with a PEG and with no complications...?
I had all of his symptoms, but could still get in the nutrition that I needed. Others here had the same, less or more and needed the PEG. I cannot tell you what that difference is, I can only say that everyone is different.
I don't care if you do or don't have a PEG. Everything that she describes is normal for the time frame. I don't know why their MD is against the PEG, that's something that they should be asking their MD.
I'm not a MD and don't prescribe treatment.
And like Doug, I'm done with this post, so you can get in the last word and then this post can die a slow miserable death.....
Doug you said,"Unlike Skiffin, I had the whole shebang including nine weeks of rads and a couple of chemos."
Not sure what you think I had for treatment, but....
I had nine weeks of chemo in three week cycles (Cisplatin, Taxotere and 5FU), that followed with seven weeks of concurrent weekly chemo (Carboplatin) and 35 daily injections in the stomach of Amifostine just prior to 35 sessions of rads. So I feel I also had the whole shebang. I did not have a neck dissection, but did have the tonsils removed prior to all of the chemo and rads.
Kent "the PEG should be left as "Optional," for our discussions, and the important thing is that we get the word out there for new Patients that a PEG is something they should discuss with their C med team- that's what the PEG issue is really about.
I agree totally....
John
My only excuse was that Gunsmoke was getting to a crucial moment and my brain was delinking from my fingers. (This is radio, of course. We are OTR fans and Sunday night is devoted to this.)
Your rads and chemo were stronger than mine and the only additional adventure that I had, as you point out, was the neck dissection which, while not particularly fun, was not all that bad. It did set my hockey comeback back by a couple of weeks, though. I had started to skate the month after treatment but couldn't really play yet.
I did maintain enough ingesting ability throughout the whole process that the first month after they finished the tanning, I gained 15 lbs and gained almost 5 a month thereafter. My opinion, and that of my doctors, was that maintaining this gave me a head start once they finished the frying.
From http://www.medscape.com/viewarticle/722056 From Medscape Medical News
Radiation Planning Reduces Dysphagia in Oropharyngeal Cancer
"Agreed, said K. William Harter, MD, who was approached by Medscape Oncology for outside comment. Dr. Harter is professor and vice chair of radiation oncology at the Georgetown University Medical Center and Lombardi Comprehensive Cancer Center in Washington, DC. 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."
He, and the other doctors, did, practically every week, counsel us on whether to go for the tube and helped us weigh the pros and cons. And each time it came down on going without even if by sometimes narrow margins.
And now, this really is the last time I will post on this thread anyway, if not on this topic.
Thanks for listening and for keeping the flame throwers pointed away, Doug0 -
NP DougGoalie said:Sorry, Skiff
My only excuse was that Gunsmoke was getting to a crucial moment and my brain was delinking from my fingers. (This is radio, of course. We are OTR fans and Sunday night is devoted to this.)
Your rads and chemo were stronger than mine and the only additional adventure that I had, as you point out, was the neck dissection which, while not particularly fun, was not all that bad. It did set my hockey comeback back by a couple of weeks, though. I had started to skate the month after treatment but couldn't really play yet.
I did maintain enough ingesting ability throughout the whole process that the first month after they finished the tanning, I gained 15 lbs and gained almost 5 a month thereafter. My opinion, and that of my doctors, was that maintaining this gave me a head start once they finished the frying.
From http://www.medscape.com/viewarticle/722056 From Medscape Medical News
Radiation Planning Reduces Dysphagia in Oropharyngeal Cancer
"Agreed, said K. William Harter, MD, who was approached by Medscape Oncology for outside comment. Dr. Harter is professor and vice chair of radiation oncology at the Georgetown University Medical Center and Lombardi Comprehensive Cancer Center in Washington, DC. 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."
He, and the other doctors, did, practically every week, counsel us on whether to go for the tube and helped us weigh the pros and cons. And each time it came down on going without even if by sometimes narrow margins.
And now, this really is the last time I will post on this thread anyway, if not on this topic.
Thanks for listening and for keeping the flame throwers pointed away, Doug
I know it was just an oversight....you've read my story a hundred times I presume...
It's like boot camp as for treatment...it doesn't really matter how much or what kind of treatment you endured. It's something that you've never been exposed to.
I went through USMC boot camp..supposedly one of the toughest. But for someone fresh out of high school it doesn't really matter. Going through any boot camp is going to more than likely be one of the biggest cultural and physical shocks that you've ever went through..so whose to say one was any more tough than the other to the mind and body.
Best,
John0 -
Misty35 My Apologies
Sorry that the discussion turned a bit ugly...
My intent was never to imply that your husband should or shouldn't get a PEG. I endorse the PEG if needed.... But I have a problem with comments that suggest or insist it should be required. In my opinion and from my own experience, it simply is not required in all cases.
Sometimes the conditions, the doctor's input along with the patient's input definitely point toward having the PEG installed. Though sometimes the patient's don't admit it or think otherwise. In those instances it's up to care givers as yourself to step in and make the best educated decision based on all factors.
Again, I'm sorry if I derailed your original question, but you did get a lot of input either way, LOL....
I wish only the best for you and your husband...
Thoughts and Prayers,
John0 -
Tough call for the doctors, alsoSkiffin16 said:Misty35 My Apologies
Sorry that the discussion turned a bit ugly...
My intent was never to imply that your husband should or shouldn't get a PEG. I endorse the PEG if needed.... But I have a problem with comments that suggest or insist it should be required. In my opinion and from my own experience, it simply is not required in all cases.
Sometimes the conditions, the doctor's input along with the patient's input definitely point toward having the PEG installed. Though sometimes the patient's don't admit it or think otherwise. In those instances it's up to care givers as yourself to step in and make the best educated decision based on all factors.
Again, I'm sorry if I derailed your original question, but you did get a lot of input either way, LOL....
I wish only the best for you and your husband...
Thoughts and Prayers,
John
We got to the point where the rad doctor was ready to throw in the towel, as the weight loss was starting to alarm him. Also, Doug's tumor had stopped shrinking, and they were afraid we were looking at longer/more intense radiation. Oh, and he was unable to take pain killers, other than oxycodone (and even that was bothering his ravaged stomach).
At that point, if we'd agreed, the chemo guy would have gone along with us and supported the PEG. However, the answer to the question Skiffin proposed: "How will this help now?" was "it won't help now - it will just help once the nausea dies down." They all agreed that putting a PEG in a stomach that was ralphing every 30 minutes would introduce a big variable in our hunt to quell the nausea.
The rad folks left it up to the chemo guy, who supported the idea of stopping the barfing first. In our litigious society, I think this was brave, as it meant discharging Doug when he was not eating, barely drinking, and had lost 30 lbs. It also meant getting him away from hospital protocols, which had resulted in too little sleep, too few IV fluids, and too many allergens being injected. In hindsight, it's easy to see that they made all the best calls in this case - once he stopped barfing, his throat opened up more and he quickly progressed up to a full liquid diet. Hindsight is lovely.
So, armed with more information, anecdotes and opinions than you'd ever thought possible, the best advice is still to listen to the doctors. If they insist, that means something. If they advise, you have some decisions to make. Multiple times, I heard, "you know what your husband is going through better than we." Very, very true.0 -
Well, today Neil had
Well, today Neil had radiation and they decided to keep him over for fluid intake. He was very dehydrated and had lost 7pnds over the wknd. He has a consult with the GI dr. tomorrow to discuss his peg. He tried and now realizes that he has to be nourished in order to heal. I feel like it will be a a whole new ball game, he is getting weaker, cannot drive himself to radiation and becoming even more of a zombie from more pain meds. Now I will have to read up on the tube in order to help him with it. I use this site quite a bit for info and it helps so much. I hope everyone is doing well in treatments and remissions!0 -
MistyMisty35 said:Well, today Neil had
Well, today Neil had radiation and they decided to keep him over for fluid intake. He was very dehydrated and had lost 7pnds over the wknd. He has a consult with the GI dr. tomorrow to discuss his peg. He tried and now realizes that he has to be nourished in order to heal. I feel like it will be a a whole new ball game, he is getting weaker, cannot drive himself to radiation and becoming even more of a zombie from more pain meds. Now I will have to read up on the tube in order to help him with it. I use this site quite a bit for info and it helps so much. I hope everyone is doing well in treatments and remissions!
I am glad Neil has an appointment tomorrow. Please keep us posted.
Thinking of you both,
sweet0 -
To PEG or not to PEG
Buzz had his PEG inserted prior to his first chemo and I think it saved his life. He quit eating after the first chemo, before rads even started. Yes, many of us have weight to lose but not at the cost of adequate nutrition. With good nutrition/hydration, your husband will do better during treatment and will recover faster afterward. Karen0 -
PEGbuzz99 said:To PEG or not to PEG
Buzz had his PEG inserted prior to his first chemo and I think it saved his life. He quit eating after the first chemo, before rads even started. Yes, many of us have weight to lose but not at the cost of adequate nutrition. With good nutrition/hydration, your husband will do better during treatment and will recover faster afterward. Karen
Misty-
I have been reading this message board, but never wrote on it. But your question hit home. My husband is a throat cancer survivor. He was diagnosed with throat cancer in June of 2010, he went through 6 weeks of radiation and 6 or 7 chemo treatments at MD Anderson in Houston. In the 3rd week of radiation he got very sick and weak, he lost alot of weight because he could no longer eat due to his throat being so burned from the radiation. We were in the ER 4 nights in a row at MDA. He was ready to quit radiation and chemo and just give up. That was highest time for a Peg Tube. They scheduled him really quick and we started the formula feedings. Misty, if it were not for the Peg tube he would not have survived. I am so glad that you and your hubby have an appt tomorrow. My hubby is doing great. They got the tumor and he finished his treatments on Sept 7th, 2010. He has to go back to MDA once every 3 months for a CT Scan-to make sure that the cancer does not come back. He has an appt at MDA for another CT Scan and dr follow ups tomorrow and Thursday.
Let me know what the dr says. Our prayers are with you both.
Ruth M0 -
Welcome Ruthrmerzie said:PEG
Misty-
I have been reading this message board, but never wrote on it. But your question hit home. My husband is a throat cancer survivor. He was diagnosed with throat cancer in June of 2010, he went through 6 weeks of radiation and 6 or 7 chemo treatments at MD Anderson in Houston. In the 3rd week of radiation he got very sick and weak, he lost alot of weight because he could no longer eat due to his throat being so burned from the radiation. We were in the ER 4 nights in a row at MDA. He was ready to quit radiation and chemo and just give up. That was highest time for a Peg Tube. They scheduled him really quick and we started the formula feedings. Misty, if it were not for the Peg tube he would not have survived. I am so glad that you and your hubby have an appt tomorrow. My hubby is doing great. They got the tumor and he finished his treatments on Sept 7th, 2010. He has to go back to MDA once every 3 months for a CT Scan-to make sure that the cancer does not come back. He has an appt at MDA for another CT Scan and dr follow ups tomorrow and Thursday.
Let me know what the dr says. Our prayers are with you both.
Ruth M
Welcome to the forum, aewsome people, tons of knowledge...and like any family we at times disagree on things from time to time.
I'm glad you husband is doing well, sounds like between the MD's and your involvment you got things turned around.
Thoughts and Prayers on your good scans and follow-ups this week (and future ones)...
Best,
John0
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