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Peg Tube: Should I or shouldn't I

adamson091654
Posts: 16
Joined: Dec 2010

I am in the 4th week of my 6 1/2 week radiation. My throat is pretty sore but my DR said that I also thrush which may be contributing to the pain. I can get Ensures down with psyllium and L-Glutimine down. My question is how much worst will my throat get and should I schedule the Peg. I would love to think I could rough it and finish the treatment w/o it. If the pain is near to max after 13 radiation treatments and it will not get much worst I think I will rough it and not get the Peg. I hope and pray everyone is living their lives to the fullest. Thanks...

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Hard to advise you, other than you know it's likely gonna get worse, especially if you've only had 13 rads, and are scheduled for the typical 35.

The PEG is not the big deal one would think it is, in my opinion. Had mine for over 15-months, and only used weeks #1-8 of treatment, but kept it that long in case things went south for me. Will eliminate the struggle for what is very critical for you, now- Nutrition. Personally, knowing what I do from my PEG experience, I don't understand why it isn't mandatory that all who get, which you may or may not be, full H&N rads with Chemo don't get a PEG. I wasn't given an option, because of my C&R delivery, so the choice wasn't there for me; however, just about all who are getting H&N do struggle, as you are, and the PEG is an easy fix to eliminate the struggle. If you do get a PEG, there are several different types out there. My Surgeon told me the balloon one is his favorite, though that's not what he put in me.

The choice is your's. If your Nutrition intake is working against you to a significant degree, the PEG will definitely help with that.

kcass

adamson091654
Posts: 16
Joined: Dec 2010

Thanks Kent. I will surely factor your comments into my decision...

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I had a peg. I had three different ones. The latter was the balloon kind and a Mic-key button. Very comfy compared to the other two because you don't have the hose sticking out 24/7. I would have died without mine, so I am pretty much pro-peg tube. I didn't have much weight to lose going in tho. I held my own thru rads then the poop hit the fan about two weeks after the end of rads when my side effects peaked. I went from about 130 (maybe 135 cause they tried to get me to gain weight going in) to 87 lbs.

Not sure if you checked it out already, but under the HNC Superthread there are some links to Peg Tube Discussions and a couple of peg tube pictures if you aren't sure what they look like.

Good luck making your decision.

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

The PEG tube was for me by far the worst part of treatment AND I absolutely needed it to eat without pain and to maintain my weight. The effects of the radiation generally peak about 2-3 weeks after radiation ends. So; whatever pain you have while eating now it would probably be safe to at least double. Pain prevents our bodies from healing and makes our already uncomfortable experience so much more so. I sure would recommend the tube. And it feels so good to get it removed. My best to you, sounds like you're doing great. Amost there,

Bob

deb e19's picture
deb e19
Posts: 15
Joined: Feb 2010

I have a peg tube and am 7 months out of treatment. I didn't start using it until about 3 or 4th week of rad. I would have also died without it. I think the pain gets worse and as the ole saying goes the rad keeps on going after treatment is over. The severe pain went on for about another month after treatment and then it was a slow recovery. I still have trouble eating and getting enough calories and am in no hurry to get rid of it. I wish it was gone but not enough to risk the weight loss. I have already lost 30 lbs and have not gained any of it back. At least I can maintain my weight. Good luck.

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

My comments pretty much are in line with everyone elses. I also was just shuffled off by Docs for Peg and Port. They told me I would be glad later and I was. At about 3-4 weeks my discomfort was pretty bad.
With the peg...you can always maintain some weight and get nutriion down. You don't have to use it but it can make it easier and more comfortable. It's a personal decision. Wish you the best and let us know how you are doing...Roze

Hondo's picture
Hondo
Posts: 5795
Joined: Apr 2009

Your pain will get worse but yes you can do it with out a PEG, it is not easy. I did not use a PEG and I had rad twice to the head for NPC cancer. My advice is to get the PEG

All the best
Hondo

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

It's a pretty safe bet your pain will get worse before it gets better. How much worse and how soon before it improves is anybody's guess. Everyone is different. Bottom line is: If you need the PEG, get the PEG! Keeping your nutrition up is paramount in helping your body recover from this ordeal.

There are a few of us that made it through without needing the PEG. My treatment consisted of 7 weeks of rads/chemo. I didn't need the PEG, though I certainly would have gotten it if need be. For me, the pain was the worst the final week of treatment and for about 5-6 days after. Within a week of finishing treatment, I began to feel a slow and steady improvement.

Hope this helps. Cheers

Jimbo

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Like mentioned it's really hard to say...everyone is different, remember that, because you'll hear it a lot.

I had STG III SCC Tonsil Cancer total treatment was sixteen weeks of chemo, seven of that was with radiation.

I had no PEG, but had enough extra weight to carry me through, I lost around 45# total.

Like you around week four is when it starts kicking in pretty good. I mainly survived on throat numbing solutions, then water, Ensure Plus and a few sliced DelMonte Peaches (to keep the throat swollowing muscles working). That followed by longer lasting meds (crushed percocet in water). They even prescribed Morphine, but I couldn't tolerate it, and it did nothing for my pain.

Though the pain was always worse when trying to drink which is mostly all I did, liquids and the sliced peaches< didn't even consider solid food plus I got more calories from the Ensure Plus. I don't think it really got much worse (for me) after week four.

Definitely no taste or saliva going on though. Even water tasted like sweat...

Everyone has differing levels of pain tolerance. For me, I never really even considered the PEG nor did my MD's. But that option was always there if it were medically needed.

Best,
John

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

"Everyone is different". That is said all too often on this site, but this subject is an example where it is the definite truth. I know the PEG saved me, but others made it without it. Due to sores, swelling, etc from rads, it became impossible for me to take anything by mouth after 4 weeks into treatment. (Realized when it took me 2 hours to get down one Ensure and I would almost scream in pain after each sip if it didn't come back out). I had the PEG installed at that time. For me getting the PEG was a piece of cake (very little pain) and made getting the required nutrition relatively easy.

At 4 1/2 weeks into treatment you still have a few weeks of tough times ahead. My advice is if you think you'll need it, get it sooner than later. The weaker you are, the harder it will be to go thru getting it put in, etc. As others have pointed out, nutrition is essential now. Hope you can make it without if that's the route you choose, but it can be a fairly easy installation process and for some of us was a definite lifesaver.

Positive thoughts!

Greg

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

Dude
In my opinion, the Peg saved me from losing undue weight and kept my energy up. I have had it in for 12 months and plan to have it removed next month. I used the Peg 3 times a day and my energy stayed up and my treatment wasn't as harsh because I was feeding my body with 2100-2400 calories, (good calories) every day.
Don't be ashamed of the tube. I was at first, but my wife helped me clean it and now we even get close (with a Tshirt on) and I forget I have it. Ask yourself why you don't want it. Is is vanity, or are you scared, or do you want to man it out???? I am a big guy and I was vain about it, but I was glad I got it. Whatever you do, be committed and get through this because the other side is NED and a future without this crap we went through.....
Wishing you good thoughts and a sound decision...
All the best,
Steve

Goalie's picture
Goalie
Posts: 184
Joined: Sep 2010

Somehow, we made it through without a PEG though it actually got so bad we made a couple of appointments for the surgery and then canceled them at the last minute. I ended up losing about 35 lbs which I didn't really have to lose out of 175 as I am an athlete and it was all muscle. By the time we really needed it, about half way through, so much else had gone wrong that we were really afraid of this as well. And I was so close to the edge on nutrition that just taking the few days off from what I was doing for this surgery would have been devastating. The rad oncs were cautiously for a tube given the weight loss but the med onc was pretty much always against and he takes having to get a tube as a failure on his part.

Yes, it was hellish swallowing and chewing every day no matter what and, other than laying back for the daily tanning sessions, this was my full-time job. In retrospect, the treatment times were probably worse for having had no tube but the recovery since has been much faster for not having had it. Immediately after treatment I was eating better and got back about 15 lbs in the first month. That is probably the trade-off.

I hope this helps, Doug

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

was the phrase Doug's rad onc used in the beginning - he wanted to keep swallowing function going as long as possible. Doug lost most of his weight because of nausea and vomiting due to the second chemo, a failed attempt to try out different pain drugs and a total shut-down of his digestive system. He did lose some weight because of swallowing trouble, but nowhere near as much.

When they started pushing the PEG, Doug was still throwing up all the time - it would not have helped. Once we got the nausea/vomiting under control, he had about 2 more weeks of radiation. It was tough to swallow, but he worked his way steadily up from 8 oz and 320 calories the first day to 48 oz and about 2400 calories a day within about 2 weeks. It was not easy and we were both often in tears.

It would have been harder without IV hydration - you can go a long time without eating, but only a few days without water. Doug got IV hydration about 3 times per week as an outpatient (we found out the hard way that checking into the hospital for hydration means they need to follow feeding protocols. . . in the end, he was more dehydrated than when he checked in).

If you really have only 2 weeks left, I'd say try to stick it out. It does help you return to "normal" faster in terms of swallowing. However, be aware that if you go several weeks without eating at all (as he did) there are consequences. He developed pain and weakness in his right leg because of irritation to the nerves (no fat to protect them). You also have to deal with refeeding syndrome (we followed a protocol for this and avoided the edema and other problems associated with it, but it means you can't gain the weight back very fast).

Good luck - in the end, trust your doctors and your instincts.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

I had eight weeks of radiation. Got the PEG at about week four, as pain, nausea, and difficulty swallowing, not to mention the nasty (post-Chemo) taste of Boost and Ensure made eating too much of a chore.

No biggie. Got it as out-patient surgery, was using it by the end of the first day, it worked like a dream. Saved my life. My insuranc paid for the canned food and a feeding pump to infuse it slowly. I used it for the last four weeks of radiation and for about six weeks afterward. Never lost my swallow, bounced right back. Removal was via a simple tug, eeeeeeoooooouuuuuuch! I lived on Carnation Instant Breakfast and soft-cooked eggs for quite a while after that, but all is well now.

Its an individual choice. I got to a point where it was a no-brainer for me. You may or may not ever reach that point.

Deb

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Oh, yeah, and the only reason I used it for six weeks afterward, is that the gastroenterologist was pretty firm that he wanted me to be able to hold my weight, eating everything by mouth, for at least a month, before he'd remove the tube. Turned out to be no problem at all.

Deb

gypsy55
Posts: 5
Joined: Feb 2011

I'm hoping to get my peg tube out in about a month. How do they go about doing that and does it hurt? Do they put you out or freeze it or something? Hope it's not too scary. We've been through enough already.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

It really depends on the type of PEG you had installed. Mine came with a mushroom-shaped flare on the end, and they just pulled hard and slow, and it popped out. Other folks' PEGs have an inflatable balloon or curly pigtail on the inside, and they just deflate or uncurl those, and the tube slides right out. Other folks actually ended up with a "G" tube surgically installed, and have it have it surgically removed. You will need to speak with the doctor who installed it, to know.

Best of luck with the procedure. You got it put in... you learned how to use it successfully and it saved your life. Getting it removed will be a piece of cake in comparison to all this. Good luck with it. No matter how helpful it was, you will LOVE IT when it is gone.

Deb

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

About week 3, I was in bad pain and couldn't really eat and was losing weight so had the PEG installed. For me it was a good choice as it saved my life as I was able to get nutrition in and used it for 7 weeks post treatment. The first few week post treatment I lived exclusively off it.

You can compromise your condition and healing without good nutrition going in. I also found and used a vege based food so you can choose what you out down the tube.

Best wishes.

Scam

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

I would advise you to get the PEG. Buzz had his inserted before treatment started. We ended up using it right after the first chemo when he stopped eating/drinking 5 months ago. He did not lose any weight and is healing much faster now that the radiation has ended.

lindajoarnold
Posts: 2
Joined: Feb 2011

I was told I should get the peg before treatments started. But my gastro said his mother had the same thing I did and put her PEG in before treatments. Hers was more trouble than it was worth and she never needed it. but told me of i go 24 hrs without eatting or drinking to go into the hosp and he would admit me and put it in. Hope this helped

adamson091654
Posts: 16
Joined: Dec 2010

I will factor everyones comments. I will get my second set of chemo (cis.) tomorrow and finish my 3 and 1/2 weeks of rads this Friday for a total of 6 and 1/2 weeks (33 rads total.) I feel OK now and taking in mostly Ensures w/HMB and some pudding/ peaches. I am going to play it by ear and not hesitate if I can't swallow. Thanks again. This site is invaluable.

Dave Adamson

gypsy55
Posts: 5
Joined: Feb 2011

Yes your throat will get worse. I had 33 radiation treatments and HAD to get the peg because I couldn't swallow and got sooo sick of boost and ensure. My magnesium went way down because I didn't eat anything, so getting the peg was only hope. It's not so bad once you get used to it. I've had it in for 3 months now and still can't swallow anything bulky like meat or chunky. Also taste buds don't completely come back for a while, so yea it's not soo bad

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