CSN Login
Members Online: 3

No PEG when having radiation on neck

oceanlifestyles's picture
oceanlifestyles
Posts: 4
Joined: Jan 2010

Wondering if anyone has feed-back on how they did not using the PEG feeding tube during treatment. I had tonsils removed now they are going to start chemo & radiation. I cannot imagine pain in throat could be worse than what I just went through?

pk's picture
pk
Posts: 192
Joined: Aug 2009

I would strongly suggest you have a feeding tube placed. It's not that bad and you will find that it really is a life saver when it just plain becomes too painful to eat. My husband was resistant, but his oncos didn't give him a choice. Thank God he had it placed or he would have gone into negative numbers in the weight dept. It's not nearly as bad as it sounds and it is not permanent. He had his pulled 3 weeks post treatment.
PK

oceanlifestyles's picture
oceanlifestyles
Posts: 4
Joined: Jan 2010

My doc have been 50/50 split on getting PEG. I do have some excess weight on me right now. Is the problem when eating Pain?

pk's picture
pk
Posts: 192
Joined: Aug 2009

Ocean life could be my name too. Love the ocean and spend as much time there as possible when trying to excape the MN. winter. will leave for FL on Monday and then upon return from there we will head to St. Simons Is.,Ga for the remainder of the winter thru mid April. !!!

You are in for the ride of your life. Get your feeding tube now!!!! My husband had weight ot lose too. With the feeding tube he still lost weight(40 + lbs) and now is at a perfect weight for him I'm the chubby one in the family now. Damn!!!!

On the upside - His first PET scan indicated he was cancer free. The hell you are about to go thru will allow you to enjoy the ocean life for a long long time. Hang in and hang on. The people on this site are here for you and pray for you daily!!!
PK

Hondo's picture
Hondo
Posts: 5601
Joined: Apr 2009

Welcome to CSN, this is a great place to be to get help and find out what next.

Not to get you scared but believe me you have no idea of the journey you are fixing to embark on. I did not use the PEG tube with my treatment and lost about 55lbs, not good for someone who is 6’1”. About week #4 I was looking more like a French fry inside and out and my wife would have to force me to try and eat, I had a lot of unnecessary pain because I did not want the PEG. I read about how well everyone did using the PEG and can kick me self in the butt.

If you don’t mind what type of cancer do you have?

Take care my friend

oceanlifestyles's picture
oceanlifestyles
Posts: 4
Joined: Jan 2010

Squamous Cell Carcinoma / Thanks for feedback

Onmyknees4U
Posts: 12
Joined: Jan 2010

Oceanlifestyles

Welcome to this site! You will find the information and genuine care to be invaluable.
My son did not have a peg until the last week of treatments. By then he Really dreaded another procedure as he was very weakened from 30 Rad. treatments. He had no choice by this time as swelling etc. made swallowing extremely difficult. Even if you have a little 'extra' weight now,remember you have to keep caloric intake up as much as possible. And the post treatment weeks you will have healing to do. My son is in this phase now and it is much better with the peg.

God bless and keep us posted of your progress.
sally

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

I opted not to have the tube for treatments (rads/chemo) and by the end I was unable to swallow much of anything. At times one glass of Gatorade a day. I was loosing between 10 and 15 pounds per week.

This is not a good option and you should really think about what is best overall.

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

I had a food peg from the start and it is a good thing that I did. By the middle of the second week of my treatments I was not intersted in eating anything. By the start of the third week I was not able to swallow anything other than medication and water. Losing weight is not a good thing in this instance. Not eating gets one so week that it is hard to function. Don't ask me how I know. Been there and did it wrong and am still paying for it because of all the weight and muscle that I lost. I was obese but losing weight the way I did is not the way to go. the food peg will keep you alive after treatments.

Drink lots of water and get as much food or energy into as you can stand. Get the food peg!!!

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

You think you've had a sore throat?
You haven't had a sore throat.
Come back to this board and talk about the pain in your throat when you've completed your rads and "cooked" for two or three weeks after your treatment has ended. Then you can talk about the pain in your throat.
I'm not being harsh, just emphatic -- and begging you to listen to those who've been there, done that.
Yes, I know, we're all different and some people have made it through without the PEG, but why take the chance? Get the PEG put in. It's not a big deal, and if you don't need it, fine, don't use it.
But if you need it, and chances are very good that you will, you'll be awfully glad you have it. I went from 195 pounds to 155 pounds -- and I had a PEG.
My docs insisted I get the PEG before I began treatment, and that made very good sense. When you're in treatment and your throat is all screwed up is not the time to have the added stress of having the PEG put in.
Best of luck to you. The treatment sucks, but you'll get through it.
And we'll be here for you.

--Jim in Delaware

Tanager75
Posts: 86
Joined: Aug 2009

I could swallow thoughout my treatment but the rads and chemo made everything taste beyond horrible. I lost 40 pounds, weight I did not need, unfortunately much of the weight was muscle mass. I became very weak and now six months later just gaining back strength. This was with the tube. I hated the tube but needed it from week 2 and 6 weeks after treatment. Water tasted like sweat to me so I needed the tube to hydrate too (keeping hydrated was difficult). Overall, I was glad I had the tube in before I started treatment.

Peace,

mark

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I didn't have a PEG or tube and went through what you are about to...

I also had my tonsils out, followed with nine weeks of chemo then seven weeks for concurrent chemo and 35 rads....

I'm sure everyone is different as for their thresholds and tolerances. Personally for my self, it was very tolerable. Like you, I still feel the pain from the tonsils was worse for me.

I did have pain the last few weeks of rads and a few weeks thereafter. I lost around 45# and during those weeks primarily survived on water and Ensure Plus. During the tonsils I had a few days I couldn't eat, but eventually mashed potatoes and gravy or mac & cheese was pretty good along with apple sauce and jarred del monte peachesThe pain during both tonsil removal and rads was managed with the pain solutions and pr dissolved percocets. I also had liquid hydrocodone during the tonsils being removed and with a refill, that also worked during the rads.

It's definitely rough, and I did become weak when not eating anything other than Ensure. The logic for me and Ensure was that each was around 350 calories each with a ton of minerals and vitamins. That was way more than any food that I could get in my and was a lot less painful than trying to consume food. You do need to keep your throat muscles exercised and maintain the ability to swallow food during that time though...

Good Luck and stay in touch.
John

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

Hi Ocean,

I was where you are now. My ENT guy said the pain would be worse from Rads than surgery. While it is bad it is different pain but enough to say it can be pretty bad.

On the PEG, I didn't even know what one was till about week 2-3 and I was losing 3 kgs a week (8-9lbs). A friend whose brother went thru suggested I get a PEG and I asked my Doctor about it and he agreed straight away and scheduled the Surgery. I had it put in about week 3.

It did make it a bit harder after I had started treatment though it is doable so you can see how you go BUT if I went thru again I would get it in before you start Rads as your immune system etc is working better to you'll have less chance of difficulties.

The PEG also makes taking pain meds easier further in when the treatment is heaviest which is usually weeks 4-6.

I have posted on earlier threads that you need to be aware that once you finish treatment, you may have a further few weeks of hard time as you may not start to recover immediately so just be prepared for that. I wasn't - and left after my last treatment thinking it was all over. I crashed and burned badly and hit a bad depression. I hope you sail through as some people do. Keep using as many faculties as you can through treatment : talking, swallowing, eating etc

Have faith that you will look back on the rough road ahead as ancient history. All the friends on these pages have pulled through and so can you.

Best Regds
Scambuster

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

Peg and Port put in before any treatment, and it turned-out that such was essential. Onco didn't give me the option, but I initially balked at the thought of a PEG. Woulda been a big mistake to try and make it thru it all without. And, yeah, I still have it a year later, though am hoping to get it out after my next Pet Scan in early April.

As for the pain, you may come to know what most of us have- the need for meds most extreme in dealing with it. I would encourage you to use what your Drs. make available to you- it may lessen the trauma your body will be experiencing. It does get a bit rough, Ocean. Just never lose sight of the fact you can survive the treatment- we all have, and are living to tell of it.

Believe.

kcass

torch's picture
torch
Posts: 5
Joined: Aug 2006

They put my PEG tube in one week after I started treatments, and boy was I glad.
I still lost a ton of weight, but it would have been life threatening without the tube.
If I were you, I would get the PEG.

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

My husband had tonsil cancer too and did not have surgery. His DR HIGHLY recommended getting the PEG before we started treatment. Even though he was able to take in liquids and food during his entire treatment it was not enough to keep him well nourished so we did have to use the PEG a lot. I am glad we had it because he never got behind the eight ball. I would say you need to rethink going through this without the PEG. My best to you! Donna

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Listen to your DOC! I still lost 35 pounds with PEG. DOC insisted to have it in before treatment started. At start of second chemo he says to me, "You're probably wondering why you have that feeding tube. You are going to find out before this week ends". He was right. From second chemo until about 2 weeks after last chemo and rad PEG was my best friend. So glad I listened to him. Good luck.

Mike

Snotty Peed
Posts: 4
Joined: Jan 2010

I had a peg tube and cath for 9 months during my radiation (33) and chemo treatments (4 - 3 Day Sessions - 30 Days Apart.) All 4 of the chemo sessions dropped my blood counts so low, I spent 3-7 days in the hospital after every one. Nuero Endocrine Carcinoma of the Sinuses. Full Frontal and Right Maxillary.

I lost 73 lbs WITH a feeding tube. From 231 to 158 in 4 months. I was told to pour 6 cans of Boost per day, but I was fortunate if I had the strength or stomach to handle 2 cans per day. I remember once going 2 weeks with maybe 2 cans total. There was not even a possible thought of taking food by mouth.

I would recommend the tube, but I may have done without the port if I knew what I know now. Had very little trouble with the tube if any at all, but it helps to have someone assist with the pouring of your vitamin drinks into the tube. In my case, I had full teeth extractions, which actually prevented any mouth sores and I never got the sore throat, but with total temporary loss of taste and dry mouth, a filet mignon taste likes cardboard. Everything taste like cardboard. My recommendation is to get the tube, if you doctor thinks you will have difficulty at some point with taste, swallowing, mouth sores or sore throat. It's painless to take the drink via your peg tube. No fun involved, but it's painless.

Notes:

I also developed a hernia where my feeding tube was removed a year later and had to have it repaired with mesh.

When your doctor takes it out, I'd offer a hint that he DEFLATE the bulb, before removing. My doctor got a good kick in the ribs and he has just fell off his horse a few days before. Next time, no short cuts Doc! (-:

God Bless You!

Hondo's picture
Hondo
Posts: 5601
Joined: Apr 2009

First let me welcome you here to CSN, sounds like you had a ruff time with the weight loss, I went from 230lbs to 172lbs now 4 ½ passed treatment I am only 186lbs. Hope you stay with us as there are a lot of people just at the starting line and will need support.

Take care, God be with you.

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

Sounds like you had the balloon PEG. I have the button variety, as do a number of the others. Had mine for a year, and it will be at least 15-months before I get it out- my next Pet Scan is in April, and only with good results from it will I allow removal. All my Drs. have said I can have it out, but I error on the side of caution, and the long-term impact of more than one place in my stomach wall w/scar tissue.

Didn't they ever put you on "formula?" You mention Boost- not the same. Typical is the 1.5 formula, but I tried and was able to tolerate the 4.0- which I lived on for 7 full weeks, along with morph and ice, and magic mouthwash. Never had formula?

You mentioned "Port." I got mine because of the two 4-day continuous sessions carrying two pumps each time- feeding into my Port. However, with my 4-day stay in a hospital in week #6 it sure did come-in handy with the anitbiotics being fed into it (along with the morph).
Still have the Port, and my Oto/ENT says I will have for at least 3 years, total. The monthly flushings are a hassle, but acceptable.

Sorry to hear of your suffering, friend. Still got my teeth, though minus the enamel, and especially minus the gum tissue around them; but, being around 15-month, life is good. Hope you stay active in this forum.

Believe.

kcass

iamlostru
Posts: 3
Joined: Jan 2010

Hi all - tagging on to this thread.

The background:
Since @ Oct been going through the diagnosis process. Starting with maybe a little acid reflux causing voice box burn...through left cord T1a small cancer (pretty much removed in biopsy), when CT/PET was read as full larynx deep tissue involvement and a node on right side. Vocal cord cancer doesn't travel, so the node thing was weird, and the Larynx didn't visually seem bad. Turns out, many Drs disputes and tests later - now with the super world famous type), the CT/PET read was wrong. There is a confirmed by biopsy right side tonsil HPV cancer, the right node occurring from it, and the vocal cord, totally independent but frankly not terribly concerning. (2 primaries).

Likely Treatment - (another Radio Cr review next week - and some more pathology - but probably) -
The one uncommon thing I guess is that using a unilateral radiation (only to the effected tonsil) is recommended. The NY hospital and team have been doing this for many years now with great success. Of course, the benefits of only one side exposed to loss of saliva and such is great. Generally, it is thought that the lymph node will clear itself if the Radio of tonsil is successful, and the vocal cord (again which is a stationary cancer), presuming pathology re-confirms cleared with broad margins (and is almost healed), to also NOT screw around with. Obviously, I'm going to be living with an ENTs head in my throat every few weeks for the next years, and all this is conditioned on keeping close watch. Anything appears on vocal cord acting quick - but no Rad there would mean quick and easy surgery is still a great option. If left Tonsil gets involved, again, there early...figure out what, I guess maybe Radio it. Cross that bridge if/when I get there.

I believe we would do a Chemo too...probably Erbitux (more tolerable), and doin that will encompass not only the tonsil, but the vocal cord and rt lymph node too...basically a prophelaxis (and maybe a bit of curative) to the whole area.

Some situational things:
Of course this all came about at a terrible time of life for me. Cancer can be very inconvienent! I had just come back from the southwest (where I was living for a year and then my Co closed - job gone) to NJ, where my house had just sold...and basically put everything in storage and living at GF condo as this all happened. Damn selling my home was the stupidest thing I have ever done. I miss having my things around me and sure I will more as this goes on. The not working, not knowing future and all doesn't help. The Drs I'm now using, and the ones most familiar with unilateral approach, are NYC based. Like an 1.5 hour commute from where I am in NJ. Making taking treatments there even tougher. Even if staying with a friend in the city, where again, I'm going through this without my own bed, my own stuff - bathroom, etc. We are seeing how a seemingly highly proficient (albeit not my favorite personality) Radio with a center 5 mins away feels about doing it, hopefully with direction from the NYC ones. That at least makes it a bit easier...and I'll just have to put life on hold for lord knows how long...as interviewing, or taking a job during this is crazy/impossible. And even getting my own place, again because where the treatment is is no where near where I would want to live, also impossible.

New Concerns - especially from reading all this:
The PEG has not been discussed recently, and when it was back when - I think they thought it wouldn't be needed. I get the impression here that is just not so. And that it may well be better to be prepared than waste away and have to have it put in while weakend. The Erbitux I thought was so tollerable that, other than some skin issues, it too would't be life disrupting. In fact, I was specifically told that there would be minimal interruption to life...if I was working that I could absolutely continue, with just coming in for the few minutes of Rad before or after work. Again, I'm getting the idea, that while many here may have had more surgical along with Rad/Chemo that all may be more of a hoped for and exceptional result than standard. I see that many find they need pain meds a lot. Is it more from their surgery or fro the rad treatments? Anyone have trouble with their Dr not appreciating the pain, or depression, or being too worried about prescribing? (I mean i can see where some Valium for the next weeks is not a bad idea).

Sure, any suggestions advice I'd appreciate, or yapping with any going through it too. Seems I've got about a week before things start getting ugly!

Sort of kiddingly: I'm the unluckiest person in the world! I mean I get Cancer and should have lost weight..no I gained like 12 lbs...and the Big C...the excuse...start forking over that medical marijuana...and send the bill to CIGNA please...oh thats right...i got throat cancer...i have enough trouble with air, forget smoke!

kkw62
Posts: 12
Joined: Jan 2010

As a caregiver I would definately recommend you have a PEG installed. My husband lost 50+ pounds that he didn't have excess to loose. He had major difficulty within the first 2 wks even just swallowing water. Food had no taste so he chose often not to eat. The PEG was a life-saver - literally! It was also an easy way to get meds in when he could not swallow. Most of his meds were written in liquid form including morphine when he could no longer swallow.

fishing_again
Posts: 7
Joined: Jan 2010

I was only 51 and in good health , My dr recomended the peg tube but didnot insist , I went ahead with it thinking I would rather have it and not need it than try lator . The peg tube turned out to be the only way I could keep weight - 3000 calories a day for a year from a bag at night while I slept , I stil have not gained weight after 2- years , food has not tasted the same, even if you can get food down past the pain their doesnt seem to be much around you,ll want to eat ?
Anything you can do to help your recovery (( get it ))
Good luck friend

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

This is not a situation for less is more. In this case more is not enough. Steps taken in the early stages of your treatment will pay dividends to you in the later stages of recovery. I was so short term in my thinking that it was debilitating to me. To think that after all the treatments I was to get worse did not compute to me at the time. Well, I did get worse and became devastated and depressed. Not accepting that condition has made my recovery much more complicated than it needed to be. I am finding that acceptance has been a very difficult task for me to work through. Coming to this site has shown me the error of my ways. Thank God!!

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

i would definitely get the PEG tube. you cannot be prepared enough going into this. i have a PEG and i started at about 130 lbs, and i am down to 88 lbs. you don't know pain until you are a head and neck cancer patient going thru radiation. man o man. there were days where my mouth bled constantly. one day going home from radiation the whole piece of skin on the roof of my mouth slagged off. that was the most pain i ever had. i am not trying to scare you, but i wish i would have known how hard and painful it would be. i could not eat almost immediately after starting treatments. my mouth is still destroyed. i have not eaten an actual meal since 4-19-09. my radiation was over on 5-15-09. i still have my PEG tube in.

talk to a nutritionist and work with one during treatment. most head and neck cancer patients die from malnutrtion. be prepared.

i used magic swizzle and was on 75mcgs of Fentanyl, and the pain was unbareable. i am still on 50 mcgs, and my mouth is still in daily pain. i live with at least a 4 on the pain scale everyday, constant. have so many problems with my dry mouth.

i wish you the best of luck and a speedy recovery. again, not trying to sound harsh, but i was not prepared for the pain that i had to endure.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Wow. Do know what rad energy you had? Was it over 60 grays. You are remarkable! You *must* be incredibly strong.

Respectfully,

Mick

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

i don't think it was over 60. i remember him saying it was a pretty average standard amount, because i had asked if i could or should have less radiation due to my genetic blood disorder of Fanconis Anemia. he said no. i had 9 stops during my radiaton treatments. it felt like forever during each one, squshed under that stinkin' mask. after they let me out my face was waffle imprinted, that is how tight that sucker was. i would bring in cd's to listen to, and i would go thru about 5 songs. about 20-25 minutes per radiation treatment. about a half hour to thirty five minutes counting the getting on and off the table and 'lock down'.

everyone has always told me how strong i am throughout my life. lol. i don't feel that way, but i suppose since everyone tells me that it must be true. you just gotta put your head down and plow thru. it's tough. i am still not back to work yet. been battling this thing for a year now. i am not sure if i knew how bad my mouth was going to get before i did radiation, that i would choose to do the radation again. but you cannot monday morning quarter back, so it is what it is now.

i guess i read that you are sort of just jumping into this thing. i wish you much luck and many blessings. feel free to ask me anything if you think i can help you in any way.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network