getting off the peg tube
Comments
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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BTW, I'm STILL throwing up occasionally my liquid food, usually if I let my meds get out of date.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!
Jim0 -
peg tubetom55 said:Peg tube
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
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!0 -
Trailjeb54321 said: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
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,
Debbie0 -
good adviceCraig_Griffin said:My pegtube experience
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.
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,
Debbie0 -
greatmermaid52 said:peg tube
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.
Mermaid52, that is FANTASTIC news. Praise God. I will keep you and your husband in my prayers.
God Bless You,
Debbie0 -
Hey, Jimjeb54321 said: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
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 Delaware0 -
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.jeb54321 said: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
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.1 -
PEG Tubenwasen said: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.
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.
(
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
Richard0 -
Welcome Richard.CrimsonRacing said:PEG Tube
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.(
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
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,
Sweets0 -
Peg Tube
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.....LoL0 -
I was diagnosed with Stage 4 throat cancer in 2015. Since then I’ve been NPO and have survived on Glucerna 1.5 Cal via peg tube. I’m finally going to resume normal eating after I complete my 3rd and final esophageal ablation surgery a week from now. I will be so glad!
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I was able to get off the tube about 6 weeks after treatment. I drank a shake a day that I made with carnation instant breakfast, whole milk, ice cream, a banana and peanut butter. It alone was 900 calories, then I would eat cream of wheat, scrambled eggs, soups, and I drank lots of warm green tea with Honey.
The green tea helps with the mucus and to get taste back. Also I still have taste issues about 18 months after treatment, but I find foods that smell good are easier for me to eat.
Tracking your calories will help you to know if you are eating enough. My dr. said I had to maintain my weight for 2 weeks before I could get the tube out.
Hope this helps!
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Congrats Superman on finally getting through the necessary surgeries and treatments to get to the point of being able to eat once again. You must be excited beyond description. I guess after this much time has elapsed you will have to start out slowly with small amounts. Enjoy and celebrate-Take Care God Bless-Russ
1 -
Just wanted to encourage you on your journey. It does get better. I finished treatment about 10 years ago so I don’t really remember how long it took for a full recovery of swallowing ability. But it does come back.
Given that you live alone, try to avoid spending too much time cooking a specific type of food until you are sure you can swallow it. It will be disappointing to spend so much time preparing it and yet be unable to eat or waste it.
I could pretty much eat anything as long as I took small bites and washed it down with a lot of water., which didn’t make any difference since my tastebuds were totally destroyed. However, it does come back and that in itself was a very exciting discovery, savory tastes first. Sweet tastes took a much longer time to return and it generally didn’t last very long initially, for example the first bite of an ice cream was great then nothing. I can taste an entire bar of chocolate covered vanilla ice cream now. Pears are still a hit and miss today.
Some things still don’t work for me today, mainly lean pork chops and poultry breast meat as they are too dry.
Good luck in your journey.
0
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