When is it time to give in and get the peg?

"Seductive"
That's the term our rad guy used for the PEG. His concern is that the PEG removes the necessity to eat, so you won't.

Food will hurt - most folks rely on the "magic mouthwash" and a liquid diet. The folks who make it through without a PEG generally need to get fluids IV at some point - hydration is more critical than calories for a while.

Our problem was nausea, not pain, so the PEG was not an ideal option - Doug lost 40 lbs but gained most of it back in 6 months. The gain was made more difficult by his pain in swallowing near the end of treatment, but it was possible. 8 months post-treatment, he has no eating issues other than dry mouth.

What pain meds is he on now? Does he have any experience in the past with them? He might be able to get by with the Fentanyl patch and some breakthrough pain meds - this is a conversation you should have with his rad doctor, as there are a lot of options available (as long as he can tolerate them - most made Doug barf, so there were not for us). Many rad docs save "magic mouthwash" for extreme cases.

Getting a PEG is not the end of the world - I personally think it was better for Doug to not get it in the short run (1-2 years) but he would likely be just fine in the long run(2-5 years). He was playing hockey soon after treatment ended and I'm glad he didn't have to miss this year, but if we'd had to get the PEG, I'm sure he would have just picked it up again next year.

Peg
six year survivor of tonsil cancer. Had a PEG before treatment started. It is important to keep yourself hydraded. If you are unable to take fluid or eat then the PEG offers a simple means to allow for intake. You do have to have it surgically inserted but it is a short procedure.

I did not have any problems. Poured in Gatorade and other fluids all day long. I was able to eat a little all the way through but used the PEG for a lot of intake. I kept it for about two months after treatment until I was sure I could eat and drink enough on my own.

As we all say everyone is different but I would highly recommend a PEG for Head and Neck patients.

Misty35 said:

He is on the patch as of
He is on the patch as of this week, lidocaine and md anderson for swishing. He does have percoset(sorry for the spelling). He tends to take the pills when he is goin to try and eat something a lil heavy like soup or something. He is very strong and positive and is now starting to rethink the tube. I also think the thick saliva is starting to aggravate him. It is weird how all the things I have been reading about are now starting to happen. I just don't want him to be at his lowest and then have to have a surgery, but I know him, he will fight it. He uses biotene wash as well, any other over the counter suggestions for his mouth?

Pilocarpine
The thick saliva is the worst - very gross. Doug took pilocarpine (salagen) throughout - it is supposed to help keep saliva going, but he was still spitting thick, ropey stuff into a cup for a few weeks there.

Percoset is pretty weak stuff - oxycontin on a regular basis (can't remember if it is 2x or 3x per day) plus oxycodone for breakthrough pain is a more normal combo.

A lot of folks swear by salt/baking soda and water rinses. We had the prescription for Caphasol, which is a proprietary mix of sodium, calcium, and phosphorous salts that are supposed to help mouth tissue heal.

Remind him the pills take 30-90 minutes to peak in effectiveness. There's no real reason to eat anything thick or heavy (in fact, those liquids might be too abrasive) - Doug's diet for a long time was thin milkshakes and Boost Plus. Skiffin swears by those canned peaches, and others like the Scandishake. If you can afford it, stock up on everything you can think of and then be patient trying them out. I was just re-reading my journal and saw that we tried several things before we hit on something Doug could stand.

If he does have to get the PEG, it might take a few days before he can get the benefit - once he starts approaching a 20% weight loss, start to have that conversation with him. Again, we decided against the PEG, even though Doug lost almost 25%, but every one is different.

Everyone is Different
While AB and I tend to disagree on the absolute necessity of having a PEG. We both agree on the importance of getting in as much calroies and nutrition as possible to maintain recovery.

We also disagree on how that is, or types of calorie intake. I feel it's important to get in what you can in any manner with in reason, Ensure Plus, a few sliced peaches in light syrup, Boost whatever. While AB feels that proper diet and nutrition should be considered even during this period. I'm more for the now and getting it in, worrying about better dietary concerns after you are recoverying and back to a level of normality.

And there's nothing wrong with that, it's just two different opinions to achieve a similar goal. To make it through this battle, and live to fight for many more days down the road.

Even in pain, I was never to a point that I couldn't eat or drink with the appropriate level of pain meds to get me through the routine of eating and drinking several times a day.

I didn't have a PEG, and it was never a problem. I didn't refuse it and like your husband's MD's, the option was out there if it came down to having one put it.

A lot of your questions and concerns are eally hard to give you a definitive answer. If your husband is doing fine in his eyes, is getting hydration and calroies in to him with Ensure, Boost or something similar. He probably is fine and has it under control. Even with pain...I had pain, but it wasn't unbearable, and I did what I had to do to make it through. The alternative is not an acceptable one.

Now I did have a routine of taking the lydocaine numbing solutions, A big glass of water 2-3 Ensures, a few slaiced peaches in light syrup, more water and chased with a crushed dissolved percocet in a little water to help knock the edge off of the pain after. I did this several times a day.

So in that respect, it may be that your husband is going through similar. But to you he's going through a lot of pain and suffering. Which he is, but maybe he can deal with that and will be through this entire ordeal.

It's not a matter of how tough he is or I was. It's just that some people can handle it, and some can't...there is no control over it, it's just what it is...like being sea sick, some are some aren't. Some can handle it with meds, some can't....

It really depends on if this is working for him and he's making rash decisions about it. Sometimes people just refuse to accept their problem is out of control and refuse to take in fluids and nutrition and are in danger of malnutrition or sever dehydration. That's the time to step in either you or the MD's and make that decision.

So like I said before, it's really hard to answer your questions based on what I know he is actually going through.

If he's not in control, losing too much weight (to the point of basically starving himself), or not being rashional (communication is key). Then yes, a PEG should seriously be considered.

Bottom line, you have to stay hydrated, and you have to take in calories and nutrition. It may not be enough to not lose weight, but it at least needs to be enough to function and have some energy to make it through the day and maintain recovery.

Thoughts and Prayers,
John

Skiffin16 said:

Everyone is Different
While AB and I tend to disagree on the absolute necessity of having a PEG. We both agree on the importance of getting in as much calroies and nutrition as possible to maintain recovery.

We also disagree on how that is, or types of calorie intake. I feel it's important to get in what you can in any manner with in reason, Ensure Plus, a few sliced peaches in light syrup, Boost whatever. While AB feels that proper diet and nutrition should be considered even during this period. I'm more for the now and getting it in, worrying about better dietary concerns after you are recoverying and back to a level of normality.

And there's nothing wrong with that, it's just two different opinions to achieve a similar goal. To make it through this battle, and live to fight for many more days down the road.

Even in pain, I was never to a point that I couldn't eat or drink with the appropriate level of pain meds to get me through the routine of eating and drinking several times a day.

I didn't have a PEG, and it was never a problem. I didn't refuse it and like your husband's MD's, the option was out there if it came down to having one put it.

A lot of your questions and concerns are eally hard to give you a definitive answer. If your husband is doing fine in his eyes, is getting hydration and calroies in to him with Ensure, Boost or something similar. He probably is fine and has it under control. Even with pain...I had pain, but it wasn't unbearable, and I did what I had to do to make it through. The alternative is not an acceptable one.

Now I did have a routine of taking the lydocaine numbing solutions, A big glass of water 2-3 Ensures, a few slaiced peaches in light syrup, more water and chased with a crushed dissolved percocet in a little water to help knock the edge off of the pain after. I did this several times a day.

So in that respect, it may be that your husband is going through similar. But to you he's going through a lot of pain and suffering. Which he is, but maybe he can deal with that and will be through this entire ordeal.

It's not a matter of how tough he is or I was. It's just that some people can handle it, and some can't...there is no control over it, it's just what it is...like being sea sick, some are some aren't. Some can handle it with meds, some can't....

It really depends on if this is working for him and he's making rash decisions about it. Sometimes people just refuse to accept their problem is out of control and refuse to take in fluids and nutrition and are in danger of malnutrition or sever dehydration. That's the time to step in either you or the MD's and make that decision.

So like I said before, it's really hard to answer your questions based on what I know he is actually going through.

If he's not in control, losing too much weight (to the point of basically starving himself), or not being rashional (communication is key). Then yes, a PEG should seriously be considered.

Bottom line, you have to stay hydrated, and you have to take in calories and nutrition. It may not be enough to not lose weight, but it at least needs to be enough to function and have some energy to make it through the day and maintain recovery.

Thoughts and Prayers,
John

Like Skiff says, everyone is
Like Skiff says, everyone is different. My husband had weight to loose as well, so they did not do the peg in the beginning. He had trouble eating about 3 weeks in as well and pretty much stopped eating for awhile. After 50 ponds lost, we finally had enough and got the peg post chemo/rad. We are 10 weeks out and he still uses his peg daily. He does eat by mouth every day. Some days, he will eat stuff his mouth is not ready for and he will be hurting pretty bad and can not eat by mouth. I am verry happy with our decision to get the peg.

luv4lacrosse said:

THE TIME IS NOW
Hi Misty, if this were me, I would arrange to have it placed now. I too waited awhile and eventually had to have it. I wished I would have had it in from the beginning.

Nutrition and hydration is key to a smooth recovery.

Mike

Definitely now!
Every forum has that question which keeps popping up, thus the invention of FAQ. This is probably it for this forum. Yes everyone is different. Yes some of us were overweight. Yes we all have different pain tolerances. And malnutrition kills 33% of cancer patients. The PEG is awful to get put in. It's a royal PITA to live with and it hurts most of the time. There is no argument for not getting it. Some folks say he will forget to eat? Nonsense, he will probably only use it for a short time and can always practice swallowing if needed. He needs to lose weight? Absolute nonsense. Cancer is not a weight loss regime. I lost 50 lbs. but was fat and overweight to begin with. Weight loss is a lifestyle change. He can join Jenny Craig when it's all done. He could die without it. He may not tolerate the procedure later on in treatment. Things can go terribly wrong making eating impossible. We would never consider driving without auto insurance yet we are willing to gamble with our lives? It's risk assessment and hands down you are better prepared and equipped with the PEG.

Greend said:

How do you really feel?
Don't hold back ratface, you need to tell us how you really feel :>)

Very well stated and I agree 100%

Denny

PS Mine never did hurt when it was put in nor has it hurt since. I guess I was lucky. Uncomfortable and as you say a PITA but thats all.

Get the PEG earlier than later
I am a strong advocate for the PEG. I got one early, before treatment began and had it for 13 months. It was a lifesaver for me...now I eat all I want whenever I want. Still can't eat certain foods, but that is normal from what I hear on this site....
I'm a believer....I vote PEG now.

hawk711 said:

Get the PEG earlier than later
I am a strong advocate for the PEG. I got one early, before treatment began and had it for 13 months. It was a lifesaver for me...now I eat all I want whenever I want. Still can't eat certain foods, but that is normal from what I hear on this site....
I'm a believer....I vote PEG now.

Same here
I didn't really have a choice, right after my initial diagnosis and conference with the oncologist. He said that "this is the way it's going to go". In two days, I was put under and obtained my peg tube, while another oncologist probed my throat area manually. Four days later, they put in a medi-port just under my left shoulder. Surgery was completed 3 days later to remove a non-erupted wisdom tooth due to where radiation would take place. And, a week later I started the 1st of 6 rounds of Cisplatin. Being that the tumor was primarily in the left tonsil, it had wrapped around my carotid artery and was headed to my spine/neck area, which meant this S.O.B. was very aggressive and the team had to act quickly. The bottom line is that I just had to trust the medical staff, and didn't have the time left on this earth to try and get a second opinion or wonder about peg tub vs. no peg. I just said, 'let's do it".

Larry

Whosoever said:

Remember he is loosing muscle mass and bone density not fat. I had my tube put in before radiation began and now on my third week have started to use it for various reasons. I still can manage some solid food so I eat according. Remember it is about colonies and protein that will help compliment his treatment and recovery. Good Luck

Instead of thinking of it
Instead of thinking of it as, when is it time to 'give in' and get the peg, like it's some kind of defeat and weakness, I wish it was thought of as 'when is it time to avail myself as a valuable tool to keep me from starving to death'.

My mouth was one of the worst my doctors have ever seen. The roof of my mouth came off in a sheet. I don't care how much mediacation you take, there is no way you're going to eat when your mouth is like that. You also cannot swallow when you have scar tissue.

The most important thing IMO is getting enough calories, and nutrition in to make it through and to heal from this ordeal. Not getting enough nutrition may lead to death, or a longer illness.

It amazes me that people with pump themselves full of poison, and burn themselves with radiation, but draw the line at getting a life saving tool, like the peg placed.

I don't think everyone needs a peg, but I do think it's a necessity in some cases.

ratface said:

Definitely now!
Every forum has that question which keeps popping up, thus the invention of FAQ. This is probably it for this forum. Yes everyone is different. Yes some of us were overweight. Yes we all have different pain tolerances. And malnutrition kills 33% of cancer patients. The PEG is awful to get put in. It's a royal PITA to live with and it hurts most of the time. There is no argument for not getting it. Some folks say he will forget to eat? Nonsense, he will probably only use it for a short time and can always practice swallowing if needed. He needs to lose weight? Absolute nonsense. Cancer is not a weight loss regime. I lost 50 lbs. but was fat and overweight to begin with. Weight loss is a lifestyle change. He can join Jenny Craig when it's all done. He could die without it. He may not tolerate the procedure later on in treatment. Things can go terribly wrong making eating impossible. We would never consider driving without auto insurance yet we are willing to gamble with our lives? It's risk assessment and hands down you are better prepared and equipped with the PEG.

Disagree but only with the absolutist prescription
Yes, this comes from the POV of someone who made it without a PEG. And I know that few do and also that it is not a matter of condition or will. Look at Jeepman, a military guy as fit as you can be. He felt he needed it and got it. Done. I do not look down on anyone who decides for it whether because of weight loss or because their mouth is so destroyed that they can't eat.

BUT, I vehemently disagree with the position that EVERYONE must get it and that there is no argument for not getting it. I had hoped that we had settled at least this absolutist notion before. There are some, perhaps not the most powerful, arguments against this such as the fact that some people just don't need another hole poked and that some of these holes get infected. Frankly, the fewer holes I had in me, the better.

Beyond that, there is the argument that it just isn't necessary in every case. My problem was that I returned everything to the outer world for weeks on end. Had I a tube it just would have supplied ammunition more easily. As Dr Mary says above, once we solved the barfing problem then I could eat/drink enough to get by and begin to gain weight again. The one time in the hospital that they tried to feed me intravenously was a disaster as I started into shock and it was a Code Red - Stat and all that stuff.

So, in summary, ladies and gentlemen of the jury, I believe that we had pretty much agreed that MOST people would end up needing or benefiting from a tube and that for MOST people the benefits outweigh the risks, but that for SOME people this was not true.

However, I agree that EVERYONE should have their doctors discuss the pros and cons.

Of course, the MOST IMPORTANT reason for not having a PEG is that you can't play hockey with it. But for some reason not everyone understands this...

Thank you for your attention. Doug