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getting off the peg tube

sanctuario
Posts: 4
Joined: Dec 2008

hello everyone,

I need help! I have finished treatment now 6 weeks 30 radiation sessions for tongue base cancer and am doing well I am told, but I am having a heck of a time getting back to eating. I can swallow and some foods are going down, but it seems like it is all trial and error.
It is too easy to use the Peg tube. I live alone so i am doing this myself. Can anyone give me some suggestions on what to do and any plan that worked for them. I can do things like bananas and cottage cheese, soup, shakes, very small amounts. What is a realist time frame?
Any help you can give me is greatly appreciated.
What seems so simple is incredibly hard!

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

Not sure if this will help but mom had throat cancer and it took her about 3 months to get back to "normal" eating, she at first did potatoes, soups easily swallowable foods and then went into chicken, pizza, hot dogs etcc.
Its very hard and it takes time but it will all come around for you think it depends on your healing and scar tissue also, sounds like your doing great once you start to eat things may tatse different but in time it will be okay i think it took mom about 6-8 months before things were "GREAT" for her she ended up back on peg tube before long she was only able to eat "normal" for maybe 2 months:(
I wish you best of luck and i hope this helped some what just wanted to give you an idea about how long. It seems like forever but just keep eating the simple things to give you a taste at least and try small small tiny baby pieces of differnt things mom used to cut up her chicken into the smallest pieces becasue she was so anxious to eat but it didnt taste right so she just waited and would try again.
Best Wishes

sanctuario
Posts: 4
Joined: Dec 2008

thanks so much for your encouragement, I know it will take time, I just did not know it would be so hard. I have done a lot of hard things in my life, but this tops them. But I know I can do it.
Thanks for taking time to comment.
happy New Year

josie_5
Posts: 6
Joined: Aug 2007

i have a tube also. sometimes its ok; sometimes it hurts. Are u using the protein drink "Jevity"? has a lot of vit. and protein. Also scrambled eggs, jello, whip cream, (soup by mouth)applesauce, ice cream, 7 up, and sort of thing that help any? josie

mermaid52
Posts: 9
Joined: Oct 2009

Josie
make sure the Jevity is not loaded with sugar ...cancer feeds on sugar . Try a high protein whey and make your own liuid foods in the blender. Mix whey protein with your flaxoil and bananas ,strwberries etc.There are protein drinks that are sweeten with stevia or Lohan or xylitol which are all low on glycemic index. You want to starve your cancer by staying off sugar, and processed carbohydrates.

mermaid52
Posts: 9
Joined: Oct 2009

Josie
make sure the Jevity is not loaded with sugar ...cancer feeds on sugar . Try a high protein whey and make your own liuid foods in the blender. Mix whey protein with your flaxoil and bananas ,strwberries etc.There are protein drinks that are sweeten with stevia or Lohan or xylitol which are all low on glycemic index. You want to starve your cancer by staying off sugar, and processed carbohydrates.

sanctuario
Posts: 4
Joined: Dec 2008

Josie,

No I am not using that drink, I am using osmalite, a complete food in the can Yuk Will look for Jevity.Thanks for giving me your suggestions.

Nancy

tom55
Posts: 10
Joined: Oct 2008

Here's my story for what it's worth. After extensive neck surgery from MTC, I was left with a trache and a peg tube. The first few months I concentrated on breathing. I didn't worry too much about eating. After close to a year, I began to experiment with different things, textures etc that I could swallow without aspirating into my lungs. I never worried about the canned liquid I was drinking, I left that to the nutritionists. What was the difference, I couldn't taste it anyway?
I went to the U of Mich Hospital Speech-Pathology dept. and was taught various tongue exercises as the tongue is very important in swallowing. What a difference.
After about 4 weeks began to eat a variety of foods, made steady progress and 3 months ago, the PEG tube was removed. (Hold your breathe for that one,) They just yank it out. Sounds worse than it really is.
Anyway the moral of the story is be patient. Try different textures and see what you can eat. See if you can find a speech therapist that can help with swallowing techniques. I/m sure it will all resolve itself in time. Good Luck. Tom

victoria ferrano
Posts: 1
Joined: Jan 2010

hi, would you please describe the tongue exercises you were taught? Mom had a major stroke and you are right, when you're intubated, then have a trache, breathing is the top priority. Now that it is removed (trache), we are trying to get her off the peg tube. She can swallow any liquid, from water to soda to coffee to a milkshake. Right now she is supposed to be on pureed food -- although her test shows she does well with pureed food, and slightly aspirated with thin liquids -- we can't find one pureed food she likes!!! Can anyone help with exercises and pureed foods that do the trick? Even her favorite, mashed potatoes and gravy, makes her gag!

sanctuario
Posts: 4
Joined: Dec 2008

Hello,

Thnaks so much for your words of encouragement, I know I should be able to do it, it is getting out there and getting the food mix to try. Three months is fantastic!

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

I had mine removed after 2 months of use. Once I was allowed to start food by mouth, it was my goal to get it out as fast as possible. I would start with some food by mouth and finish off with the cans to keep up with the amount of calories required.

When it was time to have it removed I did ask the doctor for a bullet to bite on, but all he had to offer me was a stick to bite on. I bit right through the stick.

solodoc
Posts: 1
Joined: Jan 2009

I am a caregiver for a base of tongue cancer patient who is now two years after surgery and radiation having trouble keeping up the calories and swallowing in general. I was wondering if anyone had a lead on:
1. Treatments or ideas about swallowing.
2. Best liquid diet and how to prepare it.
3. Any other ideas.

Thanks in advance!
Lee

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

Welcome solodoc,

As for the swallowing see if the one you are caring for can see a speech pathologist that specializes in swallowing. You can check with http://www.swallowingdisorders.org and see if there is someone in your area that might be able to help.

As far as recipes and liquids, there is a book called "Easy to Swallow, Easy to Chew Cookbook" and "The Dysphagia Cookbook: Great Tasting and Nutritious Recipes for People with Swallowing Difficulties". Both are available at Amazon.com. The first is written by several speech pathologists that specialize in swallowing disorders. I'm not sure about the author of the second, but it might help.

Good luck you the both of you.

bany
Posts: 38
Joined: Jun 2008

thank you for the cookbook suggestions, my dad hasn't been able to chew since his surgery 7 months ago. it has been difficult finding/making food that is easy for him to eat. i'll try this too, we're trying to keep his weight and strength up for radiation treatments :)

elaine

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

The other thing you might want to look into is weight gain powder. I used one that I could add to my liquid nutrition to add up to 700 calories.

Craig_Griffin's picture
Craig_Griffin
Posts: 32
Joined: Feb 2009

Lee, I am a recent base of tongue cancer survivor. I still have my tube, but do not use it. The doctors are not all convinced that I am cancer free yet. I began eating solid food 5 days after radition treatment ended. That was a mistake. But the oncologist encouraged me to eat solid food "as soon as possible". For your concerns I would say: 1) Swallowing comes back very slowly. The most important thing for me was to get a deep breath before swallowing. That way if I choked, I was better prepared for it. I had the best results with scrambled eggs, and french toast. I still have to swallow sometimes 4 times to get it down. 2) Other than "Insure" I don't know. 3) It is good to gain confidence very very slowly. Don't try and make progress with building back the muscles too fast. When I really felt ready, I tried a Subway meatball marinara sandwich. It was the closest thing to my "pre-cancer" diet that I tried, and I felt as though I had made progress. I have a question also for you- Do you have any experience with a lot swelling in the neck area during recovery. I no longer have the upper lymph nodes or salivary glands working (4 months after radiation). Most sincerely, Craig Griffin.

Fireman
Posts: 28
Joined: Feb 2009

I still have my PEG tube in place. It took me 4 months before I slowly started eating by mouth, small portions, soft foods, and because of my dry mouth from radiation knocking out my salivary glands, I must have something to drink to wash things down. My doctors are not in a hurry to take the tube out due to the radiation damage and it being cold and flu season. The thought is that my throat can become irritated and swell not allowing me to swallow. Up until 4 months after radiation I would gag, throw up, or choke when I tried to eat. Some foods still burn so I'm careful what I eat. I am now 7 months after radiation and can eat just about anything but still need to eat slowly and wash it down with a drink of some sort, and also choose foods that are not too spicy. Definitely cannot talk and eat at the same time now. My mother would be proud. You will need to experiment as to what's best for you, but do not be in a hurry. That was a big mistake for me and I fear I did a little more damage to my throat by trying too much too soon. The PEG tube I look at as my emergency friend for now. I went from 225LBS to 175LBS so was glad it was there to rescue me after I tried to tough it out without having a PEG tube. It does not bother me at all. I won't miss it when it's gone, but I'm glad I finally got one. That's just my experience - Hope it helps - (Patience)is key.

Craig_Griffin's picture
Craig_Griffin
Posts: 32
Joined: Feb 2009

Hi, I am a cancer survivor from base of tongue. A friend in our support group used her peg tube for over 5 months, and when I last heard she was barely able to eat anything solid after that time. I was encouraged to eat solid food "as soon as possible" after radiation by the oncologist. This was a mistake! I had a lot of difficulty and did not realize that my recovery from radiation would be long term (4 months now). This was mainly due to the weakness to my throat. I stopped using the tube about 1 week after radiation was discontinued. The long term effect is that my throat was not yet ready and I now must deal with a large infection very near my larnx. But after all this I would not go back to my tube due to the problems I had with "priming my intestines" to accept solid food. That, for me was worse than anything else. If I had to start over I would have used my peg tube for at least 2 months in order to feel confidant that my throat was ready. I hope that this hepls you. Sincerely, Craig Griffin, Munster, IN.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I have resisted responding to this because I did not want to put a damper on the generally pro-active, positive, go-for-it attitude of early respondents, an attitude I support 100%.

But I have been reading this, and other posts regarding the same subject, and have wondered what the heck is wrong with me. I came out of the hospital after a 15-hour surgery and was ready to drink water and eat a lot of things almost immediately, some that my primary caregiver frowned upon.

I DID have a PEG tube, and I used that for the most part, but I had hopes to be back to eating regularly in very short order, and some of the things I was eating in small pieces were very encouraging in that regard.

Then I had radiation treatment for seven weeks. And things changed.

It has been perplexing to me for some time that while I had half of my tongue replaced, I can not seem to eat as well as others who have lost MOST of their tongues. And because I am rather competitive, it REALLY annoyed me.

The fact is that the radiation created some swelling and scarring, some of which went away (I had surgery in October of '05, followed by chemo and the rads beginning in November), while some of it, some of it crucial, did not.

It is hard for me to swallow even a large pill. I had an endoscopy following additional surgery for lung cancer, and its purpose was twofold, one to remove any doubt that I had a leak in the gastro path, the second to see if a dilation would widen my throat. The answer to both was No. Good news, bad news.

I do eat. I eat many things. Steak is not one of them, and while that is a goal, I can live without it.

I bring all of this up to suggest to some of you that you should NOT be in a hurry to get rid of your PEG tube. Yes, you WANT to get rid of it, and I certainly wouldn't want to dissuade anyone from that goal: it is MY goal. But do not be frustrated if you are not done with it in two months, or five months, or even a year. As someone has suggested, it is a nice safety blanket or whatever, to assure that you continue to get nutrition while your ability to eat on your own is still borderline for whatever reason.

You all have my best wishes with respect to getting rid of the tube, and for good health. There are some great testaments to willpower and determination among the responses to this post. Remember, though, that no two cases are the same. Do what YOU have to do to get healthy, while taking the advice of others only as it truly applies to you.

Take care,

Joe

debbiejeanne's picture
debbiejeanne
Posts: 2454
Joined: Jan 2010

Craig, I agree with you. I couldn't even try to eat before my 2.5 mo mark of being done with the rad. I am just now trying more foods but still get very scared when something gets stuck in my throat. That is my biggest problem. My last trmnt was 10/22/09 and I still only eat a few things.
Hey, you and I are almost neighbors, I live in cincinnati.
Well, I wish you the very best and you and all the others will be in my prayers.
God Bless You,
Debbie

mermaid52
Posts: 9
Joined: Oct 2009

my husband was on the PEG tube for 9 months. All during treatment and 6 months after. He was in pain and
could not swallow so well. I feed him whey protein mixed with flax oil and fish oil and a multitude of vegies or fruit
blended in the blender. He lost 53 pounds during treatment going from 160 to 107 lb.
But good news is he is 7 years in remission from SCCH&N stage IV.
He is regaining saliva and a healthy appetite ...it took a good 5-6 years to be able to eat most fruits.
and he says foods never taste the same as he remembered them.
Life is good! WE wish you the best....and a little advice stay off SUGAR ...Cancer feeds on sugar. Try stevia or Xylitol or Agave syrup.
They are all low on the glycemic index.

debbiejeanne's picture
debbiejeanne
Posts: 2454
Joined: Jan 2010

Mermaid52, that is FANTASTIC news. Praise God. I will keep you and your husband in my prayers.
God Bless You,
Debbie

mermaid52
Posts: 9
Joined: Oct 2009

my husband was on the PEG tube for 9 months. All during treatment and 6 months after. He was in pain and
could not swallow so well. I feed him whey protein mixed with flax oil and fish oil and a multitude of vegies or fruit
blended in the blender. He lost 53 pounds during treatment going from 160 to 107 lb.
But good news is he is 7 years in remission from SCCH&N stage IV.
He is regaining saliva and a healthy appetite ...it took a good 5-6 years to be able to eat most fruits.
and he says foods never taste the same as he remembered them.
Life is good! WE wish you the best....and a little advice stay off SUGAR ...Cancer feeds on sugar. Try stevia or Xylitol or Agave syrup.
They are all low on the glycemic index.

jeb54321
Posts: 22
Joined: Sep 2009

I'm a relative newbie. SCC base of tongue, stage 3, one node. Just finished 8 weeks chemo/radiation and its been 3 weeks since chemo and 20 days since radiation. Prognosis: very good. I haven't had solid food since about the 2nd-3rd week of treatment because I immediately lost my taste buds and everything tastes like cardboard now.

Trying now to move on, and I'm confused. The docs called all the shots going in, but I feel like the exit cycle I'm pretty much on my own. Not sure how to read the code here, or what signs to look for.

Sanctuario said "foods are going down, but it seems like it is all trial and error". Does that mean that some foods cause vomiting, or are there other meanings to " going down"?

I'm trying to figure out if there are any signs my body will send out for me. For example, I find myself dreaming and day dreaming about food. I even wake up in alarm realizing that I'm not supposed to be eating yet, and then I realize I was just dreaming about it.

I BELIEVE I can swallow. That is, I don't intentionally, but I do accidentally from time to time. I'm not sure if that means I'm going to have trouble when I try intentionally with say, soft foods, or if I'm just pushing off out of anxiety. I will be meeting with the speech therapist next week, though it doesn't seem necessary.

Mostly, I hate the idea of eating tasteless food. Its like torture. But I'm not sure what signs to look for as far as being ready to taste again.

Is the whole thing a big trial and error thing? Take a bite. Barf. Mark off the list? Will my body give me hints along the way?

BTW, I'm STILL throwing up occasionally my liquid food, usually if I let my meds get out of date. I can usually go a day or so before I either gag on mucous or actually get nausea and lose a can or so. Am I waiting for nausea to go away completely before I try experimenting? Or am I putting things off unnecessarily?

Isn't there some kind of guide book for all this? Or is it really a completely individualized thing?

I'm a computer guy, and I like algorithms and programs that tell me how to proceed. I hate this wandering and wondering and not really knowing anything for sure.

Thanks!

Jim

debbiejeanne's picture
debbiejeanne
Posts: 2454
Joined: Jan 2010

Hi, Jim. My last rad trmnt was 10/22/09 and I'm just now getting to the point where I can swollow well enough to eat some solid foods. My biggest problem is swollowing w/o getting choked or the food getting stuck in my throat. I have had that happen many times and it scares me every time. I sometimes have to put the handle of my toothbrush down my throat to unlodge the food. Some foods still do not taste right, chocolate; peanuts, peanut butter and coffee. I can't say I've tried a lot of different foods b/c I'm afraid to. It depends on if it is something I feel can get stuck in my throat. I also drink water with every bite of food to keep food from getting stuck. After treatment, there isn't enough natural saliva to make the food go down easily.
I'm glad to see you are asking many questions. I didn't know about this site until after my treatment and was in the recovering process. I try to get on here daily as it is an awesome information and support source. Before I joined the CSN I had no idea of what questions I should ask, but it didn't take long before I learned thanks to everyone who is so willing to help. People here really care about each other and they will care for you also.
Jim, I wish you the very best and strongly recommend you come here often as you will find what you are looking for. Please keep us informed as to how the eating is progressing.
God Bless You,
Debbie

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

Hello from the other Jim, that guy in Delaware.
When people talk about food "going down," some things just plain won't go down -- you can't get them down your throat and into your stomach. Fr'instance, I eat a lot of venison steaks, which have pretty much the same texture as beefsteak (minus the fat).
When I was first able to eat solid foods again I tried some venison, and the only way I could get it down was to wash it down with water. Not good. I wound up using steak sauce (which I don't really care for) and just decided to give up the venison until my throat got better.
FWIW, the first "solid" food I ate was Cream of Wheat. I moved from that to soft-boiled eggs (scrambled were a bit hard to swallow) and soups like Manhattan clam chowder.
Eventually I was able to eat boiled chicken and similar stuff that "slides" down the throat well. (I happen to like oysters, which went down real easy, too.) Thanksgiving 2008 came about seven weeks after my rads ended. I couldn't eat turkey breast meat -- too dry -- but was able to get down some dark meat. Mashed potatoes were no problem. In other words, stuff that's well-lubricated goes down well.
Yes, it's pretty much a trial and error thing. The improvements are incremental, and you just have to give things a try. I remember when ketchup was way too spicy for me -- but that summer I was able to eat my home-grown nuclear-strength habanero peppers again.
My taste came back incrementally, too. I remember how I could taste sweet first, but not salt. If I ate something sweet I could taste it for maybe the first six or seven bites, then it would start to fade away. A little later I could taste salt, and pretty soon my sense of taste came back entirely. Virtually everything now tastes the way it used to.
As for being "on your own," you are, in a way. It's pretty weird to go from being the center of attention every day, getting your rads and chemo, consulting with doctors and nurses and then all of a sudden being cut loose. I only wish I'd discovered this board when I was at your stage -- it's a great resource.
BTW, I note from your mugshot that you have a beard. Did it survive the rads? Mine got so thin and ratty-looking that I shaved it off -- the first shave I'd had since 1980 -- and I haven't grown it back. I could, but I suspect it'd be mainly gray -- and while I earned every last gray whisker, I think I'll keep shaving for now.

--Jim in Delaware

nwasen's picture
nwasen
Posts: 235
Joined: Feb 2011

I am so grateful that I found this site. And Jim, can I ever relate to you. I had Stage 4 tongue cancer with 3 affected lymph nodes. Opted out of surgery and had 35 radiation treatments and 7 chemos. My doc did not want me to be tube fed but I went from 134 to 103 in 3 weeks so in went the PEG tube. It is my friend, but will be glad to say goodbye but I seem to have a fear of eating (this from a woman who is a gourmet cook and loves to eat). I drink 7up and have had coffee and tomato soup, but then my experience with potato soup was that I choked on a piece of potato. I live alone and the thought of croaking by a piece of food after all my treatments is a real slap in the face.
I read all that has been posted and think I am going to check into seeing a speech pathologist.
I too can throw up my liquid food sometimes, but have learned to put a bit of water down first, then the food and then wait about 20 minutes and put in 60 of water. Seems to do the trick.
I am so glad to see what others are going thru. We are all different and come back different ways. I hope to see more people post on here; we all need to help each other with advice and offer encouragement.
Hope all that have posted are doing well and eating again. I am now less anxious so thanks to all who have helped on this cold winter night.

CrimsonRacing's picture
CrimsonRacing
Posts: 16
Joined: Feb 2011

I've now been in the neighborhood of 40 weeks with the tube and without any solid food to speak of.....I try mashed potatoes and they instantly turn to concrete and I can barely get them down...I can however tolerate some broths but mainly liquids...

I take Juven,Gelclair,Whey,Vit. C,B-12,Instant Breakfast,Ensure,Boost and inter mix all these as tolerable....

I have throat pain which is eased by the famous Magic Mouthwash....I use it about once an hour and it keeps me semi painfree in my throat...

I went from 195 to 126 now and seem to be at a wall where I am not losing anymore but I'm n ot gaining........They Whey is a new addition and I realize it takes time to work....

I've just found this site,and read posts and comments with tears in my eyes.....I for one feel none of us deserve for this to have happened to us...I am sure you are all good people who have been hit by the truck that completely changes your life.....I have no clue what normal life is anymore. :o(

I still am upbeat and look forward to this ending but it sure is a very slow progression.

As for hair...........My pic will show what I had.....Now my hair is coming back but is what my son calls "High and Tight".....beard is returning to an extent and my cheek beard is returning but a completely different color(black).

Sorry for the long post........as I continue to read and post here,I promise they will become shorter.

Oh...........SCC base of tongue...stage IV....first surgery Mar. 16th 2010

Richard

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

I am sorry that you have need of our little club, but I am glad that you found it. It has really been a great life line for a lot of us. I had my PEG tube for 18 months and I didn't have any food for like 9 months. I had a stricture and had to be stretched twice. I am still not open all the way, but I can eat a lot of foods now. It was a very long struggle. I have learned to prepare things that are easier for me to swallow and have figured out ways to prepare them so I can swallow them. Still can't swallow any meat to speak of but I can deal with that. Things really didn't get better for until 13 - 15 months out. So don't give up hope. I went from 130 to 87 lbs. Been holding pretty steady between 101 to 105.

It can be hard to adjust to life afterward. We all call it the 'new normal' around here. I've been out 21 months and I am still trying to adjust what fate has brought, but I can say that I am glad I'm around to try and make the adjustment.

Best wishes Richard.

Blessings,

Sweets

graywolf46733
Posts: 2
Joined: Oct 2010

I had throat and neck cancer...all done with radiation and chemo.....I also had peg tube inserted. After a couple monts I had it removed. The only problem I had was putting the jevity liquid food in to fast....it caused me to throw up,and upset stomach. Also it caused diarrhea. Since I had it taken out it looks like I have two navels.....LoL

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