Feeding tube or no tube?

I've been reading this board since the end of January, when my husband was diagnosed with stage 4 laryngeal cancer, spread to 2 lymph nodes.  He doesn't do much on the internet, so I'm our designated forum user.  This forum has been invaluable to us, some of the best information we have gotten.  Thank you all so much, and please keep up the great work.

Treatment plan is 35 rads and 3 chemos, with 11 rads and 1 chemo left.  No feeding tube yet, but he is thinking about getting one.  He drinks Boost, smoothies, etc. and until today has been eating oatmeal, eggs, soup.  Dinner is normally whatever I have turned into baby food in the food processor.  He is almost gagging now on food, says it tastes horrible.  He has lost only a little weight, which is good.  Here's our question.  If you made it without a feeding tube, did you live on liquids only, for how long, and what did you drink?  Are you happy with your decision?  If you have a feeding tube, what went into that decision?  Are you Ok having one?  Hubby has been doing pretty well, except for the mucus thing that everyone seems to have.  We meet with the doc Monday so have the weekend to make a decision.  Thanks.

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Comments

  • robswife87
    robswife87 Member Posts: 209
    No Tube here, but not in treatment yet

    My husbands entire team has said no to the feeding tube unless it becomes an emergency. 

    They state with the tube people won't swallow and then lose the ability to swallow. The said no matter how bad the taste of feeling they wnat him to swallow the whole way through.

    If it becomes an emergency then he will get a nasogastric only. They will not open him up to infection while on chemo.

    He will refuse a feeding tube.

    Sandy

  • Roar
    Roar Member Posts: 269 Member
    No feeding tube

    I didn't want a feeding tube but had 40 lbs to play with- I started out at 195 and when treatment was finished I weighed 160- I didn't want anothe rproceedure. I lost most of the weight over the last 10 treatments- I had a similar regiment. If he can make it without the tube go for it- if he is skinny I would start planting the seed in his head that he will need it. I was overweight - the cancer diet was the only diet that helped me lose weight. Magic mouth wash did it for me. And some pain meds . 

  • Roar
    Roar Member Posts: 269 Member
    No feeding tube

    I didn't want a feeding tube but had 40 lbs to play with- I started out at 195 and when treatment was finished I weighed 160- I didn't want anothe rproceedure. I lost most of the weight over the last 10 treatments- I had a similar regiment. If he can make it without the tube go for it- if he is skinny I would start planting the seed in his head that he will need it. I was overweight - the cancer diet was the only diet that helped me lose weight. Magic mouth wash did it for me. And some pain meds . 

  • Roar
    Roar Member Posts: 269 Member
    No feeding tube

    I didn't want a feeding tube but had 40 lbs to play with- I started out at 195 and when treatment was finished I weighed 160- I didn't want anothe rproceedure. I lost most of the weight over the last 10 treatments- I had a similar regiment. If he can make it without the tube go for it- if he is skinny I would start planting the seed in his head that he will need it. I was overweight - the cancer diet was the only diet that helped me lose weight. Magic mouth wash did it for me. And some pain meds . 

  • Roar
    Roar Member Posts: 269 Member
    No feeding tube

    I didn't want a feeding tube but had 40 lbs to play with- I started out at 195 and when treatment was finished I weighed 160- I didn't want anothe rproceedure. I lost most of the weight over the last 10 treatments- I had a similar regiment. If he can make it without the tube go for it- if he is skinny I would start planting the seed in his head that he will need it. I was overweight - the cancer diet was the only diet that helped me lose weight. Magic mouth wash did it for me. And some pain meds . 

  • Roar
    Roar Member Posts: 269 Member
    No feeding tube

    I didn't want a feeding tube but had 40 lbs to play with- I started out at 195 and when treatment was finished I weighed 160- I didn't want anothe rproceedure. I lost most of the weight over the last 10 treatments- I had a similar regiment. If he can make it without the tube go for it- if he is skinny I would start planting the seed in his head that he will need it. I was overweight - the cancer diet was the only diet that helped me lose weight. Magic mouth wash did it for me. And some pain meds . 

  • Roar
    Roar Member Posts: 269 Member
    No feeding tube

    I didn't want a feeding tube but had 40 lbs to play with- I started out at 195 and when treatment was finished I weighed 160- I didn't want anothe rproceedure. I lost most of the weight over the last 10 treatments- I had a similar regiment. If he can make it without the tube go for it- if he is skinny I would start planting the seed in his head that he will need it. I was overweight - the cancer diet was the only diet that helped me lose weight. Magic mouth wash did it for me. And some pain meds . 

  • Roar
    Roar Member Posts: 269 Member
    No feeding tube

    I didn't want a feeding tube but had 40 lbs to play with- I started out at 195 and when treatment was finished I weighed 160- I didn't want anothe rproceedure. I lost most of the weight over the last 10 treatments- I had a similar regiment. If he can make it without the tube go for it- if he is skinny I would start planting the seed in his head that he will need it. I was overweight - the cancer diet was the only diet that helped me lose weight. Magic mouth wash did it for me. And some pain meds . 

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Half way done....Not yet....

    Hi Gundi and welcome. 

    I posed this question a little while back after I joined the forum and the response was more PEG than NO PEG. It's been a life saver for many here. I went into treatment wanting one for "insurance" purposes. Why not cover the bases ahead of time right? 

    Initially my RO was leaning toward doing so but the end result was much like Sandy's result. No PEG unless it's absolutely necessary. I'm half way through my treatments (30 rads, 6 chemos) and I'm doing Ok. My MO was pleased with where I'm at. I have the usual side effects. Thrush.... that's a picnic let me tell ya! Fatigue, yada yada yada.... bit overall I'm alright. 

    Not having the PEG at this point has become a goal and an incentive to eat and hydrate. Trust your team. They know what's best.

    "T"

     

     

  • jcortney
    jcortney Member Posts: 503
    To tube or not to tube, that is the question

    I resisted with both hands, feet, screams and pounding on the table getting my tube.  My MedOnc and my wife decided it didn't matter what I wanted so, right after induction Chemo and before starting Rads I got tubed.  I was determined not to use it and "show" both of them they were wrong.  Thank god I got it!  Around the end of week 4 my throat closed up tighter than a drum.  Had to really struggle to get water down.  So much so that I was on IV fluids every week until a week after treatment.

    As I told a friend here on the board last week, my recommendation would be to get it done.  Then if you didn't need it great.  If you wait until you are in such bad shape and then have surgery, well you are taxing an already badly taxed body.  There are a few folks here that made it through without a tube, I believe them to be in the great minority.  But our resident "fearless leader" John (aka skiffin) can tell you best how he did it.

    Whatever you decide, good luck.

    Joe

  • phrannie51
    phrannie51 Member Posts: 4,716
    It depends....

    I started treatment weighing 97 lbs....they took one look at me, and said "tube for you"....I got mine a week before treatments started.  As it was I lost 16 lbs which is a nominal amount of weight to lose during this treatment, but I still got down to 81 lbs.  I was on a total liquid diet starting right after rads, and remained on one till the middle of September.  I used Boost and LOTS of water.....I never needed my tube during radiation....but after rads, I had adjuvent chemo with 5FU....and became a tube feeder because of mouth sores.

    If your husband is having trouble getting his nutrition down by mouth.....getting too sore to swallow, then he might just need a tube....the two or three weeks following rads are the worst....so he still has a ways to go before any healing starts.  I'm wondering why he's thinking about it if his weight is good, and he's still able to eat puree'd foods, plus drink and swallow??

    There are some Dr.'s who feel like Robswife's Dr., that people get "lazy" or dependent on their tubes.  I've been actively on this board for a year...and keep up on other HNC boards but not so active.  I have only heard 3 people who got dependent on their feeding tubes in ALL the forums, like they are afraid of eating (out of thousands who have gotten tubes)....I can't imagine having a tube hanging down my face for months getting yanked, and pulled.....bad enough having one stuffed in your pants.  Many MANY people get them after treatment has started....and I've never heard of anybody getting an infection, either. 

    There is a reason your hubby is thinking about it.....He might want to investigate this with his Dr.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    WELCOME GUNDI ~ PEG - No PEG

    That has always been a big debate here, a little less friction these last few years though... I had battles with more than a few several years ago...when the attitude was it should be mandatory to have a PEG.

    Like mentioned, myself and a few others made it fine without a PEG, so I wold never say that they PEG should be mandatory. A lot of people sear by it, and insist that without the PEG they could have never made it.

    If that's the way they feel, then they know their bodies better than anyone..., so more than likely they would have struggled.

    For me, it was never an issue, I was aware if things went south I could always get one. But I wasn't prescribed one..., If I was, I would have gotten one.

    And yes, about where your husband is, I decided that I could get more bang for the buck (Calories) with Ensure Plus than struggling with solid food. So I had a system that worke for me...

    I would setup 3 cans or so of Ensure, a jar of DelMonte Peaches in Light Syrup...(sorry Joe), and two and a half glasses of water..., in addition to meds.

    I would take spoonful of numbing meds, majic mouthwash (Larry's Solution#2 for me), or liquid codone or something similar..., I had a few choices, LOL.

    Then drink 1-2 Ensures, a glass of water, a few peaches, another Ensure if I could get it in, more wtaer, then chase that with a crushed up percocet in the half glass of water... Then usually headed for a hot shower..., not sure why, but that always helped.

    That was my routine for about 5 - 7 weeks... Eventually going to the creamy, slippery foods.

    Bottom line is, you gotta take in fluids and calories... No matter what they do or don't taste like, it's survival, not for pleasure.

    Again, if my MD ordered a PEG, that's the route I would have taken... It's never been a decison that I made..

    We are all different, and you never know until you get to that point if you can handle it or not... And a lot of times it has nothing to do with a mental choice, it's a physical need.

    Other factors that would lead me to highly suggest a PEG, your overall health going in, body weight, etc...

    Anyways, you do what you have to do to get through...

    Water and calories..., that's key.

    Again, welcome aboard..., check the SUperThread when you get a chnace, tons of great info there...

    Best,

    John

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    fishmanpa said:

    Half way done....Not yet....

    Hi Gundi and welcome. 

    I posed this question a little while back after I joined the forum and the response was more PEG than NO PEG. It's been a life saver for many here. I went into treatment wanting one for "insurance" purposes. Why not cover the bases ahead of time right? 

    Initially my RO was leaning toward doing so but the end result was much like Sandy's result. No PEG unless it's absolutely necessary. I'm half way through my treatments (30 rads, 6 chemos) and I'm doing Ok. My MO was pleased with where I'm at. I have the usual side effects. Thrush.... that's a picnic let me tell ya! Fatigue, yada yada yada.... bit overall I'm alright. 

    Not having the PEG at this point has become a goal and an incentive to eat and hydrate. Trust your team. They know what's best.

    "T"

     

     

    Thrush...

    You know, one thing I have heard a lot of while my time on here is a high amount of people who have gotten thrush during treatment.

    I was not one...., I never had any issues with thrush....

    One thing also that I realized, I have never heard on anyone else doing what I was prescribe to do during treatment...

    I was told to rinse several times a ay, with a solution of a few tablespoons of hydrogen peroxide, a teaspoon of salt in about a half glass of water.. Sip, swish and spit....(don't swallow)..

    I just googled it, and actually see that hydrogen peroxide solutions are recommended to treat and prevent thrush, LOL...

    So you that duffer with it, or as a possible preventive, do some research and see if it might be something to it...

    Of course you might wanna run it through your MD's first... But like I said, one of my MD's were the one that prescribed me doing it.

    JG

  • Duggie88
    Duggie88 Member Posts: 760 Member
    Gundi

    I had a tube (through the nose down the gut) after my surgery. That lasted about about a month or so until I healed enough to learn how to swallow again. All along I craved water more than any kind of food. So when it was time for radiation I was determined to take everything by mouth and accomplished just that but lost Phrannie in the process (she said she weighed 97 lbs. I lost 92). They did threaten to PEG me because I was getting boney in the shoulders but with the ensure and smoothies I did OK. I would follow the advise of the doctors they know best especially with how much he weighs now and how much he can afford to lose.

          Jeff

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Skiffin16 said:

    Thrush...

    You know, one thing I have heard a lot of while my time on here is a high amount of people who have gotten thrush during treatment.

    I was not one...., I never had any issues with thrush....

    One thing also that I realized, I have never heard on anyone else doing what I was prescribe to do during treatment...

    I was told to rinse several times a ay, with a solution of a few tablespoons of hydrogen peroxide, a teaspoon of salt in about a half glass of water.. Sip, swish and spit....(don't swallow)..

    I just googled it, and actually see that hydrogen peroxide solutions are recommended to treat and prevent thrush, LOL...

    So you that duffer with it, or as a possible preventive, do some research and see if it might be something to it...

    Of course you might wanna run it through your MD's first... But like I said, one of my MD's were the one that prescribed me doing it.

    JG

    Still got it

    John,

    I've been doing a swish of 16oz water, 1 tsp baking soda, 1 tsp salt and 5g glutamine. Swish 4-8 times a day... still got thrush.  MD's recipe.  No H peroxide though. 

    "T"

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    fishmanpa said:

    Still got it

    John,

    I've been doing a swish of 16oz water, 1 tsp baking soda, 1 tsp salt and 5g glutamine. Swish 4-8 times a day... still got thrush.  MD's recipe.  No H peroxide though. 

    "T"

    Google It..

    I have even seen reference on LiveStrong... several thoughts on the positive of using the H2O2..

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    maybe yes, maybe no

    Gundi,

    I had 2 PEGS (one for dessert, just kidding).

    When I had the PEG eating was a drip away and easy peasy (sp).  I still drank 1 meal a day.

    I hated the taste and texture of food, so I say if you don’t like it don’t eat it, but remember you will HAVE TO drink all your nourishment.  That is easy too, I drank smoothies for 7 months (happily).

    Having a PEG installed is easy and invites a whole new aspect to your life.

    I had to PEG popped out at 2 weeks post.

    Matt

  • wolfen
    wolfen Member Posts: 1,324 Member
    CivilMatt said:

    maybe yes, maybe no

    Gundi,

    I had 2 PEGS (one for dessert, just kidding).

    When I had the PEG eating was a drip away and easy peasy (sp).  I still drank 1 meal a day.

    I hated the taste and texture of food, so I say if you don’t like it don’t eat it, but remember you will HAVE TO drink all your nourishment.  That is easy too, I drank smoothies for 7 months (happily).

    Having a PEG installed is easy and invites a whole new aspect to your life.

    I had to PEG popped out at 2 weeks post.

    Matt

    Another Vote For The Tube

    My hubby also fought the idea of the tube. He also quit eating somewhere around Christmas. Because of the famous "mucus", everything tastes like KRAP. Soultion=Don't Eat. WRONG!!! Tube was put in Feb. 26 along with chemo port and extraction of 13 teeth. What fun! He had no choice. Either tube or starvation. He's now lost 66 lbs. since diagnosis. Only had 1 round of chemo so far, no rads for H&N yet, only rads for lung cancer, so he has a long way to go and a short time to get there if he doesn't get more calories in. We're at 3 cans of Glucerna 1.5 a day(should be at 6 to maintain) accompanied by as much water I can get into him.

    We also have a pump to deliver the food or can use the syringe if desired. The pump is time consuming, but is his preferred method, right now.

    I vote with the folks who say to have it put in, just in case. It may save some later pain.

    Luv,

    Wolfen

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    wolfen said:

    Another Vote For The Tube

    My hubby also fought the idea of the tube. He also quit eating somewhere around Christmas. Because of the famous "mucus", everything tastes like KRAP. Soultion=Don't Eat. WRONG!!! Tube was put in Feb. 26 along with chemo port and extraction of 13 teeth. What fun! He had no choice. Either tube or starvation. He's now lost 66 lbs. since diagnosis. Only had 1 round of chemo so far, no rads for H&N yet, only rads for lung cancer, so he has a long way to go and a short time to get there if he doesn't get more calories in. We're at 3 cans of Glucerna 1.5 a day(should be at 6 to maintain) accompanied by as much water I can get into him.

    We also have a pump to deliver the food or can use the syringe if desired. The pump is time consuming, but is his preferred method, right now.

    I vote with the folks who say to have it put in, just in case. It may save some later pain.

    Luv,

    Wolfen

    No right or wrong in my opinion.....

    I'ts between you and your team of docs. 

    I had a tube before treatments started, not only did I lose 70lbs I still got taken to the "special room" and got in trouble with my doc and team bc I was not staying nourished.  Jeez, looking back I think I was a bad patient, but not on purpose.

    The tube was a lifesaver for me, no doubt.  But the first two weeks I had the peg tube (stomach) I was in pain and it just seemed my stomach did not want that darn thing in me and threw everthhing back up...

    The thing I don't like about the argument to "get the tube only in an emergency" is if the tube does not "set well" with your body and your body / stomach wants to fight back, then the emergency is just exasperated by the circumstances.

    I still did my neck exercises and I still swallowed water (tough but I did) ...and heck, with all the mucus who could not continue the swallowig exercises anyway (unless of course you carry a spitune (sp) with you everywhere you go.

    It does however sound as if your husband is doing well and aside from taste, he can still swalllow soft foods and such...me, I was liquid only and that was hard due to pain.  Eventually I could only swallow water and all my calories and protein went via the tube.

    I do pray all goes well and he continues as he is...

    Tim

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Skiffin16 said:

    Google It..

    I have even seen reference on LiveStrong... several thoughts on the positive of using the H2O2..

    I read that...

    Hmmm... very interesting indeed... I have some questions to throw at my team next week ;) 

    "T"