I know this has been a topic previously, so i hope the regulars don't mind me asking what could be a similar question again!

Did you all tolerate the PEG feed - as in stick to the regieme the dieticians give you, or did you hate feeds overnight?

By feeding during the day, did you find bolus feeding (large volumes at one go) rather than by slow infusion through pump worked better?

How long were the majority of you on the feed? I know it is until your wt returns to 'normal' and you are eating orally, so will differ between people.

My friend has great problems still taking anything orally, ended treatment at begining of April, due to the thick saliva and poor gag reflex (swallowing difficulties). Looking for that light at the end of the tunnel!

Any advice would be greatfully received, and sorry, still not worked out how to do spell check on this!

S...

I shall attempt to address some of your questions based upon my husband's experience with PEG feedings. (His swallowing failed completely, and almost unexpectedly just two weeks into radiation tx.) He was unable to tolerate the bolus feedings which we tried initially. Quickly he lost 15 lbs. right off the bat. This prompted his docs to scramble and order a feeding pump. At first we tried pump feedings during the daytime but it consumed our waking hours to the point we had to switch to nights. It seemed that feedings was just about all we were accomplishing each day and it was frustrating. Being hooked up to the pump overnight had its drawbacks too... (It was hard at first for him to sleep, and getting up to go to the bathroom was a pain having to push the IV pole and make sure the feed line didn't get yanked)... However, it was better than daytime feedings. We figured he may as well be hooked up to a feeding machine at night during the time he would be lying down and doing nothing else anyway.

When he began to feel a little better after treatment had concluded, my husband still required the tube feedings (100%) because his swallowing ability did not return at all as weeks/months went by. (We now know that it was due to a radiation-induced esophageal stricture and his opening was almost completely closed causing aspiration 100% of the time whenever he did attempt to sip water.)

There came a point in time when he decided no more overnight feedings and once again attempted bolus feedings (to try and get rid of the pump/pole altogether). Because my husband was beginning to recover fairly well from the radiation/chemo, it turned out he was able to tolerate the bolus feedings (whereas he could not when his swallowing initially failed) and actually became quite adept doing them. (When he later returned to work, he would take his fluids and liquid formula right in his office without missing a beat.)

He was on tube feedings for 11 months before his stricture was finally discovered and opened sufficiently via a series of careful dilitations (but not without a perforation which was a set-back for several weeks).

He is now able to eat most any and everything (with plenty of sipping between bites) and maintains his weight just fine. When the stricture was opened, he began eating almost normally within only a matter of weeks. Very shortly after, the feeding tube was removed.

In most cases, people who undergo radiation for head and neck cancer do not experience an esophageal stricture as my husband did, so I think swallowing ability returns more quickly for many others. In fact, some are able to at least drink a little bit orally throughout most of the radiation treatment period. Others can eat at least a little during the entire time, perhaps not same as before, but still manage to maintain some degree of swallowing function, as opposed to completely losing the ability like my husband.

Some oncologists/ENT's will refer patients to a Speech Pathologist for swallowing therapy after enough healing from the radiation has taken place. (These therapy professionals not only deal with speech difficulties, but swallowing dysfunction as well.) My husband had therapy under a Speech therapist (a treatment called "thermal stimulation") which may have helped, but we are not certain (considering his biggest problem turned out to be the stricture). The Speech Therapist can also do a procedure called the Modified Barium Swallow Study which is beneficial to determine the extent of swallowing problems and how to best address them.

You mentioned the thick saliva and poor gag reflex. My husband had the thick saliva and a very sensitive gag, often causing fits of hacking and then dry heaving violently with nausea. It was awful... but now, one year later, that has all resolved. He still has mucus difficulties at times (particularly in the a.m.), clearing the throat of the "marble" that sits in the throat after a night's sleep, but it is under control during the day. It is not nearly as bad as before, not by a long shot.

I promise it gets better. The more your friend heals (she's so fresh out of treatment), the better things will become (in terms of the mucus, the swallowing, everything).

Hope this information is helpful. (It was a long post! I'm a freelance writer and type nearly as fast as I think, so notes tend to be lengthy from me!) Please let me know if you have any other questions that I might be able to tackle. I am glad to share my husband's experiences from the caregiver viewpoint.

Wishing your friend the very best in her recovery and a quick return to eating. Hope the outcome is all GOOD! It's great you are seeking answers on her behalf. Take care.

From my heart,

Melanie

Dear S, never be afraid of asking questions here & be reassured that there is light at the end of that dark tunnel you are travelling.
My Huaband(Tonsil Cancer) had his Peg tube inserted prior to his neck disection, followed by Chemo /Radiation. Severe Mucositis set in on the 10th day & from then on we used the Peg with a food pump. The Dietician wanted him to have 1200mls of feed plus water up to a total of 2000mls.
Well we tried. He was still on Morphia which made him nauseus & the food added to the discomfort. We managed to get in 250mls after which his stomach regected any more.
We tried giving it overnight & during the day & by bolus but eventually he was admitted to hospital where the Diatician saw him vomiting & agreed the food was being a problem but as he couldnt swallow he had to persevere
We had to give the feed slowely over 15hrs & this we did in a combination of day & night feeds so that he could have a life between feeds.
Slowely he began to take small amounts of soft foods & the Peg was removed 6 months later, to the relief of us both.
Things which helped with Mucus were Irn Bru! & later, Mucodeine, discovered on this site & prescribed by our GP.
We must have put up the shares of Kleenex as he used them by the box load!
Milk increased the Mucus & I tried, once he was able to swallow, Rice, Oat & Soya milk, eventually settling on So Good which he has on Porridge every morning & doesnt precipitate mucus formation.
Now 18mths down the line, we are living life again, although as yet his taste isnt what it was.
The very best of wishes to you both, every week will bring improvement.Let us know how you are getting on & keep on asking questions.

Click PEGs for more information and click PEG problems for a past discussion. You can also search for other discussions on PEG feeding using the Find button to look up the keyword 'PEG'.

Hi there,
My name is Ananth and from good old India. I got cancer of the larynx in the year 2000 and ever since then I have been on peg feed. Its been six years now since I had even had a sip of water leave alone something to eat orally. The doctors too have decided that it would be better for me to lead my life in this alternative manner rather then getting them to go in for a reconstruction. I looked at the issue in two ways - if I did go in for the reconstruction and it did not succeed the consequences would be not only would I not be able to eat orally but would also loose my speech. And then there was also the time factor as I was not keen on getting the operations done in phases which would have been so.

On the other hand as I have accepted the situation as its going to remain - I have no problems with the peg tube or feeding through the same. There have been a few hiccups like a peg leaking or the baloon bursting inside the stomach forcing me to get a change now and then. It used to feel strange using the peg whenever I went out but after so many years - I really do not care what others think as I live for myself and not in the way the others may feel about the same.
Coming to my nourishment - I have my wife and mother who plan out my food and it includes almost everything that everyone eats - only it is well pureed. You can name the food - be it pizzas, hamburgers, curry and rice etc. - everything goes in with the help of the mixer and a milk. I have a lot of regular milk and soya milk. I keep myself well hyderated by taking in a lot of health drinks. My meals are more then what most patients take in - as I have "breakfast" - two large coffee mugs with health biscuits mashed. Then I have the health drinks as often as possible, lunch is again the same food that all eat, then its health drinks and water or milk shakes till evening when I have my green tea ( a large mug ) and then dinner which again is a proper dinner ( lentils, rice, bread, curry etc) and finally just before knocking off at night - its two mugs of chilled flavoured milk. I follow this regime wherever I may be and am very adamant about it. I then stick to my daily schedule of running and working out at the gym everyday and hence have managed to get my weight back to what the doctors advised me.

I hope your friend is well now and is able to eat as normally as before. I also hope I have been of some help to your question.
Warm regards,
Ananth

This message has been edited. Last edited by: ANANTH,

Thank you all so much for your support and answers. I seem to have misled you, my friend is male. He underwent bilateral neck dissection with Lymph removal in Jan, and then had the 4 chemo + 35 radio sessions. The oral intake reduced/stopped about session 25 of Radio, so he did really well initially. I have a feeling he may have a stricture and am hoping the medical staff look into it when he has a follow up appointment. I am not too happy with the fact he was discharged from hospital, with PEG and told, aim for an intake of 2000mls! So, he did just that, and thought he was doing ok when he got in a litre!!! So, with my nagging, i got him up to the 2 litres, just to then give him a plan to reach 3 litres a day! We have agreed on a two day rotational plan - one day his way, one day mine! Mine is overnight feeds, with bolus's of water throughout the day, and his is split feed over the day, with bolus of water. So, we are now up to 2000mls of feed + 1500 of water which he is body is tolerating even if he hates!
Thank you again for taking the time to let me know that things do get easier........just such a long road for you all.
Best wishes to all of you, and those you care for.
Thanks doc for link, i will look at

S
P.S. again appologies for spelling errors, still haven't worked out where spell check is!

Hi "S"...

Don't know why I assumed your friend was female??!! Oops

Initially trying to achieve the recommended feeding quantity (via tube) is hard, I know. As mentioned, my husband's swallowing failed so quickly that we had to scramble to increase him up to the required number of cans (of formula) needed per day for proper nutrition/weight maintenance. I suppose for a short time we were both in denial that he'd ever really need the feeding tube (which was inserted even before radiotherapy began) in spite of what our oncologist warned. But, it all worked out in the end, thank the Lord!

Yes, do ask medical providers about the possibility of a stricture. A Modified Barium Swallow study (x-ray) is probably the best tool for determining if a narrowing (or total stricture) is present. An oncologist, ENT, or other physician following your friend's cancer may order the swallow study (usually performed by a Speech Pathologist alongside x-ray professionals).

Please let me know what transpires. If it turns out that the esophagus is open and okay, then perhaps the swallowing musculature (from the tongue base down) is weakened by the radiation. If that's the case, swallowing therapy (by a Speech Pathologist) may help strengthen the weak dormant muscles to the point that a normal-enough swallow can be achieved, hopefully with minimal to no risk for aspiration. Treatment modalities like thermal stimulation and consistent strengthening exercises for the swallowing muscles may help the swallow reflex to return. There is also a therapy called VitalStim that not all Speech Pathologists are certified to do, which has received mixed reviews in the medical world, but worth investigating along with medical providers. (You may want to research VitalStim online. There's a wealth of info about it there.) Usually before any of type of swallowing therapy is beneficial or recommended, a certain amount of physical healing from the radiation must first take place. (Docs can advise about timing.)

Also, take a moment to go back and read my post about radiation-induced esophageal strictures dated March 9 under the "general chat" forum of this site. There's additional information there that may be of interest to you.

Hoping your friend will be TUBE-FREE in the near future!

From my heart,

Melanie

taking all you have said on board, and will do

thanks again

take care

s

P.S. sorry for calling you Mel when its Melanie!