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Feeding tube or no tube?

Gundi
Posts: 2
Joined: Mar 2013

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.

robswife87's picture
robswife87
Posts: 190
Joined: Mar 2013

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

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I resisted getting one put in before treatment.  It was my hardheaded belief that I could keep on swallowing food.  WRONG!  Some people can, I couldn't.   The day after it was put in, I was hospitalized for a week because I was rundown.  Had the tube taken out at the end of the year.  That was fine until I started having swallowing problems a couple years later.  I voluntarily had one put back in because I wasn't getting enough hydration.  Then I had surgery for the mandible necrosis in 2011.  Since I already had the tube in, that was made a little easier.  Unfotunately, I still can't swallow so I am still strictly on the tube.  You kinda get used to it after awhile.  Even if your husband never uses it, I would say go ahead and have it in place just in case.

 

Roar's picture
Roar
Posts: 255
Joined: Mar 2013

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's picture
Roar
Posts: 255
Joined: Mar 2013

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's picture
Roar
Posts: 255
Joined: Mar 2013

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's picture
Roar
Posts: 255
Joined: Mar 2013

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's picture
Roar
Posts: 255
Joined: Mar 2013

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's picture
Roar
Posts: 255
Joined: Mar 2013

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's picture
Roar
Posts: 255
Joined: Mar 2013

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's picture
fishmanpa
Posts: 1162
Joined: Jan 2013

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"

 

 

Skiffin16's picture
Skiffin16
Posts: 8208
Joined: Sep 2009

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

fishmanpa's picture
fishmanpa
Posts: 1162
Joined: Jan 2013

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's picture
Skiffin16
Posts: 8208
Joined: Sep 2009

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

fishmanpa's picture
fishmanpa
Posts: 1162
Joined: Jan 2013

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

"T"

jcortney's picture
jcortney
Posts: 444
Joined: Sep 2012

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's picture
phrannie51
Posts: 4060
Joined: Mar 2012

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's picture
Skiffin16
Posts: 8208
Joined: Sep 2009

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

Duggie88's picture
Duggie88
Posts: 645
Joined: Feb 2010

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

CivilMatt's picture
CivilMatt
Posts: 3321
Joined: May 2012

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's picture
wolfen
Posts: 1249
Joined: Apr 2009

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's picture
Tim6003
Posts: 1501
Joined: Nov 2011

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

TVF1943
Posts: 2
Joined: Apr 2013

What's the deal with mucous?  This is my second round of it. It seems to go away after some time, but I'm not sure of why it happens?

Hey, I think a spittoon is a great idea.

Hard12Find
Posts: 211
Joined: Sep 2012

In my case the tube was put in before treatments started, and I got a med port as well. Even with the tube I went from 235 to 141 lbs, partially due to an intolerance for the medical formula. I will never be able to tolerate vanilla flavoring again in my life. I am 3 months post treatment and beginning to work on rehabbing my swallow, I have been pretty lucky and was able to retain at least a weak swallow through out treatment, however I went probably 8 weeks with only water being swallowed. My older sister was diagnosed about a month after I was and she continued to swallow through out, and she is way ahead in recovery than I am, she just had both her med and PEG tube removed yesterday. I will need mine for some time still, however I am primarily using it for medications, working with a soft modified diet. My vote is yes on both tubes, even if you dont use them, it will prevent having a surgical proceedure or nasal cannula during treatment, when you will have the least tolerance. Best wishes either way.....Keep us posted ...

Jim

D Lewis's picture
D Lewis
Posts: 1564
Joined: Jan 2010

Both my Oncologist and Radiation docs said that they didn't think I would need the PEG. Fortunately, I had educated myself by reading here.  About three weeks into the treatment it became pretty clear that, even though I was sipping and swallowing water just fine, it was too much of an effort to force down all the nutrition I needed.  I demanded a PEG. They got me one. I used the pump, because it was easy and relaxing, and I was able to use it almost continuously on slow flow mode. Stopped losing weight, stayed hydrated, and I was pretty much able to completely take care of myself. I didn't have to involve others in my feeding regimen. A few weeks after treatment ended they popped it out for me.

Deb

D Lewis's picture
D Lewis
Posts: 1564
Joined: Jan 2010

Having the tube put in was very empowering, during a time when I didn't feel as though I had much control over what was going on. It wasn't about whether or not I thought I could make it through without one, forcing down thick, tasteless concoctions that other folks had to whip up for me, worsening an already painful mouth and throat, fretting about my weight every day... I could probably have made it through.

Feeding became one of the most important things I could still do for myself.  I was so proud when my weight turned around, and every time I went back in to the doctor, I had regained a pound or two.  I was hydrated, I had energy (of a sort), I knew how many calories I had taken in, and at the same time, I could still demonstrate that I was swallowing liquids.

Deb

boardwalkgirl
Posts: 268
Joined: Jun 2012

Well I went in to my meeting with my radiation oncologist saying I was not gettting a feeding tube, but he was pretty insistent that I have if placed before treatment started. His reasoning was not to postpone treatment while I was getting it placed later and because the surgeon would have to scope down my throat to know where to place it,and my throat could be swollen and very sore by then so I caved and gave in. I had weight to lose but I am glad I had it. I ate something by mouth every day but 1 the whole way thru and usually ate 3 times a day, not a lot but something so I wouldn't lose my ability to swallow. But I did use my feeding tube probably starting a couple weeks in, never over 5 cans a day as I was still eating. I did lose 40 lbs, 20 during treatment and 20 more since. I had the tube removed probably 6-7 weeks after I finished treatment. My vote would be to get it, but I won't lie, It hurt like H___ for about a week after I had it placed, piece of cake to have it removed. Good luck which ever way you go.

peggylulu's picture
peggylulu
Posts: 369
Joined: Dec 2012

I wonder if your weight before has anything to do with the Doctor ordering a Peg or not ? I was very over weight and my Doctors never mentioned a tube. I lost 60 pounds during tx and have lost about 10 more since . I lost it so fast tho , I lost a lot of lean muscle and am very boney in the neck and shoulder area. Now my PCG is worried about me losing anymore weight and I am just trying to maintain but continue to lose slowly.

Frown   Peggy

Army_Guy's picture
Army_Guy
Posts: 53
Joined: Oct 2010

Hi Peggy.

I went through a very similar experience and lost over 100 lbs before my doc referred me to an Endocrinologist. It turns out that the 60 radiation treatments to my throat fried my thyroid. I am now on Synthroid, gained back 30 lbs and my weight has been stable (fluctuates plus or minus 2 pounds) for more than 18 months. Ask you radiation oncologist or family doc about this possibilty.

Army_Guy

peggylulu's picture
peggylulu
Posts: 369
Joined: Dec 2012

Thanks Army_Guy I have an appointment next week with my family doctor and I will ask him to check my Thyroid !  Also good to hear you have been Ned for two years ! Thanks again,

Peggy

Army_Guy's picture
Army_Guy
Posts: 53
Joined: Oct 2010

I had a feeding tube and used it after food took on one of two tastes: cardboard or dirt. I used it for 4 months in conjuction with drinking Ensure/Boost, both of which contain more chemicals than anything of value. Once I decided to go back to solid food I had the tube removed after 3 weeks. The tube helped save my life ven when I thought it was unnatural and repulsive...By the way, I am more than 2 years enjoying my company with NED.

 Army_Guy

cic2
Posts: 12
Joined: Dec 2012

No evidence from talking to professionals that feeding tube is beneficial unless weight loss and dehydration is significant. Pros and cons but potential for long term swallowing difficulties from having a tube need to be weighed by your medical team against maintaining calories and hydration.It's a balance and everyone is different in terms of what they can tolerate.

Keep him swallowing if you can and keep the pain manageble. My husband is 4 months post radiation, on a normal diet, has gained back most of his weight, and the last PET was NED. This will pass- it's not easy- but it will pass.

Best wishes 

fisrpotpe's picture
fisrpotpe
Posts: 1345
Joined: Aug 2010

back 17 years ago it was not an option. as i look back on it over the years since i heard they were doing it, i said many times. i wish it was an option for me. it would have made it much easier.  just like learning to accept help, if we did it certainly would be much easier. 

good luck with your choice

john 

hugzfrmteresa
Posts: 1
Joined: Apr 2013

For us feeding tube was a no brainer.  The procedure is quite simple and knowing that he is getting the nutrition needed  makes life just that much easier. It  definitely worked for us. Also it is very simple to do the actual feeding. hope this helped a little.

Gundi
Posts: 2
Joined: Mar 2013

I started the recent feeding tube thread a few days ago, so thought I should give an update.  We saw the RO today and he admits that most people with laryngeal cancer do end up with a feeding tube, but he thinks my hubby can make it without since he is losing only a pound or two a week.  He still eats eggs, pancakes, the jar of peaches someone mentioned, smoothies, soups, etc. plus 3 bottles of Boost a day.  The cancer never gave hubby a sore throat, that is until week 4 of treatment, so I suspect he is one of the lucky few with a pretty tough throat.  Right now it is getting quite painful to swallow, so hubby asked and received a major painkiller prescription.  The doc said there will definitely be a feeding tube if he loses too much weight.  He has 10 rads left.

Many thanks to all who responded to my "Feeding tube or no tube" question.  There were lots of great suggestions and a pretty lively discussion.  As the medical professionals have told us about a milliion times, when it comes to cancer "everyone is different."

donfoo's picture
donfoo
Posts: 1432
Joined: Dec 2012

Hi Gundi,

If you still are making it orally, then you are single digits to end of radiation so skip the PEG. I was gung-ho for the PEG early but now just as opposed to getting one until I am heading the the skin and bones lot. I am certain I have sufficient knowledge and techniques to survive without one. Opinions and experiences on this aspect of the cancer "experience" are all over the map. Hope for the best, you are almost to the finish line. don

 

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

Gundi - your husbands situation sounds much like mine - by about the same time I was down to no food just drink.   My food nazi wife made me protein fortified smoothies plus i drank 1 to 2 Ensures a day.  It was miserable, solid food was horrible - my stomach told me not to send anything solid down there.  

2 of 3 docs told me to get a feeding tube, one insisted - he told me he was "driving the treatment bus"  maybe says I but I own the bus - my decision was that I set a trigger point weight and that once I dropped below that weight I'd get a feeding tube.    I crossed that trigger point during my last week of treatment and never got the feeding tube.

I lost 17 pounds during treatment - I started at 220 - I weigh 208 today 21 months after my last treatment.    I lived on liquids alone for months.   Turns out that no feeding tube was a good decision for me.   Am I happy with my decision - I sure am and so are all 3 of my docs.   I rebounded quickly.   Hang in there

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

Gundi - your husbands situation sounds much like mine - by about the same time I was down to no food just drink.   My food nazi wife made me protein fortified smoothies plus i drank 1 to 2 Ensures a day.  It was miserable, solid food was horrible - my stomach told me not to send anything solid down there.  

2 of 3 docs told me to get a feeding tube, one insisted - he told me he was "driving the treatment bus"  maybe says I but I own the bus - my decision was that I set a trigger point weight and that once I dropped below that weight I'd get a feeding tube.    I crossed that trigger point during my last week of treatment and never got the feeding tube.

I lost 17 pounds during treatment - I started at 220 - I weigh 208 today 21 months after my last treatment.    I lived on liquids alone for months.   Turns out that no feeding tube was a good decision for me.   Am I happy with my decision - I sure am and so are all 3 of my docs.   I rebounded quickly.   Hang in there

JoeTEMT
Posts: 4
Joined: Apr 2013

I had a feeding tube put in before my surgery for cancer because mouth would be to swollen and hard  to eat anything!  My surgeon recommended it! Was not a problem getting it in is a small,surgical procedure!  I am so so glad it was put in!  I had cans of Glucerna put in a large plastic bag with an attached tube.  It just friction fits  into the feeding tube!  I ran it through the night never felt anything and when I woke I was finished with the pump for the day!  This way I was not attached to anything during the day and could go wherever! The food cans and bags were delivered to the house and insurance paid for everything! When I was told I could start eating soft foods I eventually weaned of  the tube and when I was able to maintain my weight eating by mouth the tube was stopped! I had a trach put in and that also had to be taken out and heal before I could eat or drink.  I was so glad I had it! I had radiation also and the mouth was sore inside also lost my taste buds which are now back! I was so glad the tube was there! Ask away if you ave any more questions! I was operated at Sloan Ettering n New York on July 13, 2012 and as my last PET and CT scan was cancer free!

a.gregory.wright@gmail.com's picture
a.gregory.wrigh...
Posts: 2
Joined: Apr 2013

My onc strongly recommended putting in the PEG before Radiation and chemo started. He said if you need it during treatment, it's better to have it in beforehand. If you wait until you really need it, you will probably be in the hospital for dehydration, you will be feeling lousy, and it won't be a great time to have an additional surgery. So I put in both a PEG and a port so I don't need to get stuck any more.

I had the procedure yesterday and had a very painful night. It felt as if I had been stabbed in the gut because I guess I was stabbed in the gut. I'm feeling better now because I am learning how to avoid the painful positions. You would be surprised how much you use your stomach muscles! 

 

--

 

a.gregory.wright@gmail.com's picture
a.gregory.wrigh...
Posts: 2
Joined: Apr 2013

My onc strongly recommended putting in the PEG before Radiation and chemo started. He said if you need it during treatment, it's better to have it in beforehand. If you wait until you really need it, you will probably be in the hospital for dehydration, you will be feeling lousy, and it won't be a great time to have an additional surgery. So I put in both a PEG and a port so I don't need to get stuck any more.

I had the procedure yesterday and had a very painful night. It felt as if I had been stabbed in the gut because I guess I was stabbed in the gut. I'm feeling better now because I am learning how to avoid the painful positions. You would be surprised how much you use your stomach muscles! 

 

--

 

phrannie51's picture
phrannie51
Posts: 4060
Joined: Mar 2012

for 3 days after they put my PEG in.....the cramps were like labor pains.....from there on out, tho....it was a part of my body....one I had to tuck into my pants.

p

JacquieinFrance's picture
JacquieinFrance
Posts: 14
Joined: Apr 2013

I've just been told today that my operation to remove and rebuild my soft palate is scheduled on or around May 13th. A trach and nasal feeding tube are necessary, hopefully it won't last more than 15 days as I hope to be home after 12 if total home care can be arranged (nurse, GP, home help etc.). I'm not looking forward to this as I managed to do without during the treatment despite losing about 80 lbs. I still have difficulty with solid foods but I can manage steamed fish in sauce, mash and gravy, soups, yogurt etc. I still cook "real meals" then mash or liquidise as necessary, this way I can check on my protien and vitamin intake. I started to get some of my taste back in February, 12 months after chemo and radiotherapy finished, but only for salty foods and my saliva is practically non-existant so everything gets pushed down with lots of water. I make my own yogurt and add cream and powdered milk for the added calories. Some commercial caramel custards are easy to get down and have nearly 200 calories per 100g. Anything with "real" chocolate is also a good source of minerals - if the taste hasn't become too weird. A good home made desert is panacotta which is very easy to make and slips down well.

TVF1943
Posts: 2
Joined: Apr 2013

I have left neck cancer that migrated from my tonsils to my lymph.  It was about two thirds through my 33 radiation treatments when swallowing became difficult.  I fought getting the tube because I was still in some kind of denial.  I waited until I was so weak that I had to do it.  It wasn't very smart on my part because the last trimester of radiation was difficult and the month after radiation was concluded was very difficult.  I likely made my recovery more difficult by not being as strong as I might have been had I been providing myself sufficient nutrition.

Since then I've had a radical neck dissection and I've learned radiated tissue combined with surgery is slow to heal.  I still have the tube as swallowing, trismus, only one operational vocal chord are all post surgery issues. I could not be surviving without the tube. I may be dreaming of a burger, but the reality is the tube.

fishmanpa's picture
fishmanpa
Posts: 1162
Joined: Jan 2013

I started out wanting a PEG. After meeting with my team, they were insistent I would be fine. For the first three weeks I was. Then the bottom fell out. I had nausea from the chemo, thrush, mucositis, mouth sores, burned out throat... I started dropping weight rapidly. By the end I could barely swallow a sip of water. I'm actually feeling worse now than I did last Wednesday when I rang the bell. I know I will feel this way for at least 2 weeks ~sheesh!~ Add to that soreness from the procedure, enough mucous to fossilize a dinosaur and it makes for one happy guy... NOT! ~lol~ 

It was a goal not to get a PEG during treatment and I accomplished that goal (by hours). Today was the first time I did a feeding and it's a pretty weird experience, I was able to get a can in no problem. I'll be ramping up the feedings until I get to 2500 calories a day. Hopefully, the rawness in my throat will subside and I'll be able to start eating more liquids and soft foods. 

I'm keeping records of several things and my team gets an email every day. Temperature, weight, amount of food and liquid etc. All I know is I'm looking forward to turning the first corner! 

"T"

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