PEG
Comments
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I wanted to make it and I tried very hard. Around week 5 it all hit me at once, I couldn't drink or eat. My weight dropped off quickly and I was dehydrated. I had to go to hospital to get a hydration bag for about 5 hours and the tube installed. The tube turned out to have probably saved my life. I am now about 4 weeks post treatment and still use the tube about 80% of the time. I am working my way off the tube. In my opinion don't worry about getting the tube, I am glad I have it. Anyone else?
Mitch0 -
I'm One ...
There are a few on here that never had a PEG, myself and a few others.
There was never a time that I even considered one or couldn't take in enough nutrition. I did maintain calorie intake for about seven weeks on mainly Ensure Plus, water and a few sliced peaches in light syrup several times a day...that preceded with some numbing meds, and pain meds after.
Mine started about week four, extending for a few weeks post rads.
Nobody is in control though, all being different,some can handle it, some can't and some don't come close. It's all on how your body handles treatemnt, no logic involved.
There have also been several that started without, and had to get one eventually because the pain was too much and they were wasting away, not getting enough nutrition in.
I don't endorse not having one just because... If you need it or are in any danger of not getting enough calories. You're having issues already or just can't afford to lose any body mass, get it upfront. Better to get one while you are still reasonalble healthy than to wait until you're wasting away and not having the ability to eat or drink.
But it's not a given that everyone must have one to survive treatment.
I didn't refuse one either, it just wasn't prescribed, and it never became an issue for me.
Best,
John0 -
PEGSkiffin16 said:I'm One ...
There are a few on here that never had a PEG, myself and a few others.
There was never a time that I even considered one or couldn't take in enough nutrition. I did maintain calorie intake for about seven weeks on mainly Ensure Plus, water and a few sliced peaches in light syrup several times a day...that preceded with some numbing meds, and pain meds after.
Mine started about week four, extending for a few weeks post rads.
Nobody is in control though, all being different,some can handle it, some can't and some don't come close. It's all on how your body handles treatemnt, no logic involved.
There have also been several that started without, and had to get one eventually because the pain was too much and they were wasting away, not getting enough nutrition in.
I don't endorse not having one just because... If you need it or are in any danger of not getting enough calories. You're having issues already or just can't afford to lose any body mass, get it upfront. Better to get one while you are still reasonalble healthy than to wait until you're wasting away and not having the ability to eat or drink.
But it's not a given that everyone must have one to survive treatment.
I didn't refuse one either, it just wasn't prescribed, and it never became an issue for me.
Best,
John
I think by the end of next week I will know for sure. I am trying to consume about 1500-2000 calories per day and at this point I can easily swallow and even have a beer. I bulked up a bit before the treaments so I could lose 15 lbs an it would not be a big issue. I drink plenty of liquids to stay hydrated. The biggest problem at this point is finding food that is even remotely palatable. Been drinking chocolate milk which is about 90 calories per cup and a cup isn't much. My goal is to avoid the PEG but I realize it may not be possible. I have pain meds but no need for them at this point. If I had a PEG I sure would make a concerted effort to swallow to avoid atrophy of the muscles and extend the time the tube would be required.
John0 -
Sliced Peachesjtl said:PEG
I think by the end of next week I will know for sure. I am trying to consume about 1500-2000 calories per day and at this point I can easily swallow and even have a beer. I bulked up a bit before the treaments so I could lose 15 lbs an it would not be a big issue. I drink plenty of liquids to stay hydrated. The biggest problem at this point is finding food that is even remotely palatable. Been drinking chocolate milk which is about 90 calories per cup and a cup isn't much. My goal is to avoid the PEG but I realize it may not be possible. I have pain meds but no need for them at this point. If I had a PEG I sure would make a concerted effort to swallow to avoid atrophy of the muscles and extend the time the tube would be required.
John
That was my main reasoning for eating the sliced peaches...to keep the throat muscles working.
You may or maynot have a time come that it just becomes pretty painful for swallowing. That was why I decided to swap over to just the Ensure Plus, water, along with the few sliced peaches in light syrup. The peaches would slide down fairly easy with minimal pain.
But the Ensure Plus at 350 calories per can gave me the most bang for my buck the way I figured.
I'd have to eat too much solid food with a painful throat to come close to the same amount of calories I could get in 4 or 5 cans of Ensure each day.
I was still losing weight, but at 1500 calories a day or so, I wasn't losing that much and I could still do everything I needed to do without becoming too exhausted from no energy.
JG0 -
I was too small to start out without a peg.jtl said:PEG
I think by the end of next week I will know for sure. I am trying to consume about 1500-2000 calories per day and at this point I can easily swallow and even have a beer. I bulked up a bit before the treaments so I could lose 15 lbs an it would not be a big issue. I drink plenty of liquids to stay hydrated. The biggest problem at this point is finding food that is even remotely palatable. Been drinking chocolate milk which is about 90 calories per cup and a cup isn't much. My goal is to avoid the PEG but I realize it may not be possible. I have pain meds but no need for them at this point. If I had a PEG I sure would make a concerted effort to swallow to avoid atrophy of the muscles and extend the time the tube would be required.
John
At first I protested. My RO was willing to let me try and go with out, bit made it clear if I lost just ten pounds he was ordering one in. After I did the research and after every doctor I went to, told me I was too small to screw around, I changed my mind. Good thing I did, I would have died without one.
There is just one thing I would like to disagree with you, in my opinion. Your goal should not be to avoid a peg tube. Your goal, should be to kick cancer's arse and survive by using whatever tool you can that will help you. Just my two cents.0 -
PEGmrapp said:I wanted to make it and I tried very hard. Around week 5 it all hit me at once, I couldn't drink or eat. My weight dropped off quickly and I was dehydrated. I had to go to hospital to get a hydration bag for about 5 hours and the tube installed. The tube turned out to have probably saved my life. I am now about 4 weeks post treatment and still use the tube about 80% of the time. I am working my way off the tube. In my opinion don't worry about getting the tube, I am glad I have it. Anyone else?
Mitch
After reading everyones comments on the benefits of having the PEG, my wife, Vickie, has decided to have it done just for insurance. The plan is to have it put in at the same time she has her neck disection to remove her lumph nodes. Don't know if it's a good idea to have two operations done at one time or not. I'm also curious as to how to use the PEG. Does someone give her and I instructions on its use and cleaning?
Bob0 -
BAYGALBaygal said:PEG
After reading everyones comments on the benefits of having the PEG, my wife, Vickie, has decided to have it done just for insurance. The plan is to have it put in at the same time she has her neck disection to remove her lumph nodes. Don't know if it's a good idea to have two operations done at one time or not. I'm also curious as to how to use the PEG. Does someone give her and I instructions on its use and cleaning?
Bob
As for how to use- depends on which type of PEG she gets. The old G-tubes, like I and some others had, you just pop off the tube top and pour the liquid feeding in. Others speak of a sort of pump feedings, perhaps like an IV bag type thing.
My Onco team didn't know much of anything about the PEG. It was the Home Health people who I was advised to meet, and who got my Jevity formula for me, who set me up with the whys and wherefores, and all the supplies I needed.
Welcome, and good luck to you- she will survive.
kcass0 -
She will surviveKent Cass said:BAYGAL
As for how to use- depends on which type of PEG she gets. The old G-tubes, like I and some others had, you just pop off the tube top and pour the liquid feeding in. Others speak of a sort of pump feedings, perhaps like an IV bag type thing.
My Onco team didn't know much of anything about the PEG. It was the Home Health people who I was advised to meet, and who got my Jevity formula for me, who set me up with the whys and wherefores, and all the supplies I needed.
Welcome, and good luck to you- she will survive.
kcass
Thank you Kent. Everyday that we travel farther down this road, we are more and more encouraged.
Bob0 -
Hi BaygalBaygal said:PEG
After reading everyones comments on the benefits of having the PEG, my wife, Vickie, has decided to have it done just for insurance. The plan is to have it put in at the same time she has her neck disection to remove her lumph nodes. Don't know if it's a good idea to have two operations done at one time or not. I'm also curious as to how to use the PEG. Does someone give her and I instructions on its use and cleaning?
Bob
The road is long and hard but many have been down it and are survives just like Vickie will be. Glad you are here with us as you will find a lot of support and information you can use to help you both along the way.
Wishing you the best
Hondo0 -
Hi jtl
I too made it both times with out a PEG but lost a lot of weight that way and put my self through a lot of pain for no reason. I am now 6 years out and because of all the side effects and problems with my Jaw and swallowing I am thinking about getting a PEG to help
Thanks
Hondo0 -
No PEGjtl said:PEG
I think by the end of next week I will know for sure. I am trying to consume about 1500-2000 calories per day and at this point I can easily swallow and even have a beer. I bulked up a bit before the treaments so I could lose 15 lbs an it would not be a big issue. I drink plenty of liquids to stay hydrated. The biggest problem at this point is finding food that is even remotely palatable. Been drinking chocolate milk which is about 90 calories per cup and a cup isn't much. My goal is to avoid the PEG but I realize it may not be possible. I have pain meds but no need for them at this point. If I had a PEG I sure would make a concerted effort to swallow to avoid atrophy of the muscles and extend the time the tube would be required.
John
I'm one of those who didn't have one. Yes, food tasted awful but I just kept trying. Lots of soup, gravy, whatever works. I found olive oil was a big help. My mom was staying with me and she was mystefied why spaghetti sauce tasted awful, but plain spaghetti with olive oil and grated cheese was so good. Every morning before radiation I had a smoothie made with high calorie ensure, whole milk (or ice cream) and fruit. Tons of calories and protein right there.
As they say, everyone is different. My radiation was only on one side of my neck and not my mouth, which really helped avoid major pain problems. Never had to use pain meds. Lost about 10 pounds in 9 weeks (had lost more after surgery). I will admit there were times where I thought, "I can't continue to eat like this" but I just kept trying stuff. Took small victories.
My doctor never encouraged the PEG, altho he said it could be put in with 48 hours notice. While I sometimes choked on food because it tasted gross (the less chewing you have to do, the better) I never had the swallowing problems. So don't assume it will necessarily get worse.0 -
Totally Agree...sweetblood22 said:I was too small to start out without a peg.
At first I protested. My RO was willing to let me try and go with out, bit made it clear if I lost just ten pounds he was ordering one in. After I did the research and after every doctor I went to, told me I was too small to screw around, I changed my mind. Good thing I did, I would have died without one.
There is just one thing I would like to disagree with you, in my opinion. Your goal should not be to avoid a peg tube. Your goal, should be to kick cancer's arse and survive by using whatever tool you can that will help you. Just my two cents.
It's not something that determines how tough you are or how much you can endure.
It's just another tool in the arsenal. If you are at all in-doubt or your MD's recommend it, go for it.
You don't need anything added as for stress or something else to deal with.
For me it wasn't mentioned and was never an issue. Since I really wasn't advised that I should consider it and it was never an issue, it wasn't something I ever really investigated.
The MD's spoke of it just for information, so I ws aware it was available if they suggested I should have one.
During my treatment, anything that made it easier or was something that I could use in my bag of tricks, I made sure I had it. The PEG just wasn't one that ever came into play.
Best,
John0 -
Truck Driver taught meBaygal said:PEG
After reading everyones comments on the benefits of having the PEG, my wife, Vickie, has decided to have it done just for insurance. The plan is to have it put in at the same time she has her neck disection to remove her lumph nodes. Don't know if it's a good idea to have two operations done at one time or not. I'm also curious as to how to use the PEG. Does someone give her and I instructions on its use and cleaning?
Bob
Hi Bob and Vickie, I was about 15 months on the PEG, but started eating before I had it out. The operation to install it was, for me, minor, no problems. I was out for a bit, and it was in. Mine was simple a long clear plastic tube, with a quarter-sized bumper on the inside and another, exterior,oval-shaped stopper about 3/8" thick that could be loosened and slid for comfort--though I never needed to slide it. An aluminum pole held a disposable plastic bag into which I poured my "Isosource 1.5 Cal" vanilla-flavored liquid diet.
A line extruded 3-4 feet from the bottom of the bag, and I would plug into the line, loosen the hard plastic squeezed lock onthe bag line, and let the food flow.
Flush with water using the catheter-tipped syringes that should be included with the above, before and after each feeding. Be sure to do this so the inside section of the tube---if you're using my type---doesn't become plugged, which could mean a hospital trip to correct it.
Keep the area around the stomach entry clean. After time, my exposed line got pretty stained and cruddy looking and you can pour in and hold bit of coke or seven up, then let it sit a bit and empty it. A few times cleared my up pretty well.
I was just told by my three docs to get it before treatment, thought it was protocol. Gald I did.
Many have a "baloon" inside type now, so some of my info might not apply.
The guy delivering my pole, bags, syringes, and cans the first time showed me. He said he'd shown a couple of people.
I always wondered why it said "vanilla" on the label, when it was made to slip down a tube into your stomach. So, as I got better at laying off the tube, and began drinking Carnation instant breakfast, I tried the Isosoure--it was loaded with good stuff, lots of cals. If I mixed an 8-ounce can with 4 ounces of milk it was pretty good, as close to vanilla as anything else was close to what it claimed to be at the time. So I drank a lot of mine toward the end.
Easy Peasy,
best, Hal0 -
Thanks HalHal61 said:Truck Driver taught me
Hi Bob and Vickie, I was about 15 months on the PEG, but started eating before I had it out. The operation to install it was, for me, minor, no problems. I was out for a bit, and it was in. Mine was simple a long clear plastic tube, with a quarter-sized bumper on the inside and another, exterior,oval-shaped stopper about 3/8" thick that could be loosened and slid for comfort--though I never needed to slide it. An aluminum pole held a disposable plastic bag into which I poured my "Isosource 1.5 Cal" vanilla-flavored liquid diet.
A line extruded 3-4 feet from the bottom of the bag, and I would plug into the line, loosen the hard plastic squeezed lock onthe bag line, and let the food flow.
Flush with water using the catheter-tipped syringes that should be included with the above, before and after each feeding. Be sure to do this so the inside section of the tube---if you're using my type---doesn't become plugged, which could mean a hospital trip to correct it.
Keep the area around the stomach entry clean. After time, my exposed line got pretty stained and cruddy looking and you can pour in and hold bit of coke or seven up, then let it sit a bit and empty it. A few times cleared my up pretty well.
I was just told by my three docs to get it before treatment, thought it was protocol. Gald I did.
Many have a "baloon" inside type now, so some of my info might not apply.
The guy delivering my pole, bags, syringes, and cans the first time showed me. He said he'd shown a couple of people.
I always wondered why it said "vanilla" on the label, when it was made to slip down a tube into your stomach. So, as I got better at laying off the tube, and began drinking Carnation instant breakfast, I tried the Isosoure--it was loaded with good stuff, lots of cals. If I mixed an 8-ounce can with 4 ounces of milk it was pretty good, as close to vanilla as anything else was close to what it claimed to be at the time. So I drank a lot of mine toward the end.
Easy Peasy,
best, Hal
Good information.
Also learned tonight that my insurance may pay for all the Ensure Plus I've been buying. Will check on that later today.
I don't understand how my wife, Vickie, who has the SCC can sleep like a baby and I'm the one awake half the night on the computer looking for the latest information to help her. I guess it's a man thing, always wanting to fix what's wrong. Just wish I could work on the fix after a good nights rest. LOL
Bob0 -
The TUBEGreend said:15 years ago
I went through treatments without a PEG. Didn't need one until 13 years after treatments.
I am with you brother made it 9 years but sure wish I had it now and will be asking my ENT about getting one when I see her this month.
Hondo0 -
PEGsweetblood22 said:I was too small to start out without a peg.
At first I protested. My RO was willing to let me try and go with out, bit made it clear if I lost just ten pounds he was ordering one in. After I did the research and after every doctor I went to, told me I was too small to screw around, I changed my mind. Good thing I did, I would have died without one.
There is just one thing I would like to disagree with you, in my opinion. Your goal should not be to avoid a peg tube. Your goal, should be to kick cancer's arse and survive by using whatever tool you can that will help you. Just my two cents.
In fact it is a goal to avoid a PEG if I possibly can but not at the expense of my health. At this point it is not an issue and no one is suggesting I need one but that could certainly change. Beating cancer goes without saying.0 -
PEGMarty36 said:No PEG
I'm one of those who didn't have one. Yes, food tasted awful but I just kept trying. Lots of soup, gravy, whatever works. I found olive oil was a big help. My mom was staying with me and she was mystefied why spaghetti sauce tasted awful, but plain spaghetti with olive oil and grated cheese was so good. Every morning before radiation I had a smoothie made with high calorie ensure, whole milk (or ice cream) and fruit. Tons of calories and protein right there.
As they say, everyone is different. My radiation was only on one side of my neck and not my mouth, which really helped avoid major pain problems. Never had to use pain meds. Lost about 10 pounds in 9 weeks (had lost more after surgery). I will admit there were times where I thought, "I can't continue to eat like this" but I just kept trying stuff. Took small victories.
My doctor never encouraged the PEG, altho he said it could be put in with 48 hours notice. While I sometimes choked on food because it tasted gross (the less chewing you have to do, the better) I never had the swallowing problems. So don't assume it will necessarily get worse.
Marty you and I may have a similar issue. The tumor and affected lymph node is on the right side and that is where they are concentrating the radiation. My sore throat is natually more on that side as well. I expect to lose most if not all of the saliva production on that side but according to my onc the other side should be relatively unharmed. Like I said in a previous post I am early in this treatment so I am anticipating that things will get worse. I don't know much about the different types of equipment used to treat head and neck cancer but I was told that tomo therapy causes the least amount of damage to healthy tissue.0 -
Right Tonsil and Lymphnodejtl said:PEG
Marty you and I may have a similar issue. The tumor and affected lymph node is on the right side and that is where they are concentrating the radiation. My sore throat is natually more on that side as well. I expect to lose most if not all of the saliva production on that side but according to my onc the other side should be relatively unharmed. Like I said in a previous post I am early in this treatment so I am anticipating that things will get worse. I don't know much about the different types of equipment used to treat head and neck cancer but I was told that tomo therapy causes the least amount of damage to healthy tissue.
I had the above areas infected...the tonsils were removed just prior to chemo and radiation.
IMRT was the machine they used on me, and it was concentrated on both sides. But just a hair more on the right...7000Gr on the right and 6000Gr on the left.
And I have regained nearly all saliva and taste on both sides. Night sleeping though I do dry out pretty much.
JG0 -
Welcome to long term after affectsHondo said:The TUBE
I am with you brother made it 9 years but sure wish I had it now and will be asking my ENT about getting one when I see her this month.
Hondo
Hondo,
I DID NOT (for whatever reason) want a PEG and argued with the specialist for over a year. When I finally reached the point 1) where I could see it (my weight) stressing all of my loved ones and when the doc told me either "get it now or I won't be able to put it in later because of your weight, I gave in and had it put in. Being the Alpha Dog (as you so well stated) I was going to prove to them I could add weight without the tube. Well that didn't happen and I starting aspirating on my food to the point I was constantly getting pneumonia. As you know I now use it 100% to include crushing up my meds and shooting them through it.
Now I must say I could kick myself for being so stubborn. I don't worry about how long I need to eat, I don't worry about gaining weight, I don't worry about worrying those who love me and the grandkids think its cool that I can eat through a tube.
Good luck and may your life get easier.0
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