This is a late post, and a lengthy one too, but thought I'd add my comments in hopes it might add further insight into your dilemma.

When I was first diagnosed and the treatment plan decided, I set 2 goals; one: to make sure I received all 3 chemo treatments (having heard that many patients cannot handle te severity of cisplatin, and the thought of only getting 2 of 3 treatments scared me!), and two: not to get a feeding tube!

I don't know why I was so adamant - perhaps it was fear - but I was determined. It went really well for me right up to the last 5 radiation sessions, and with those and the 3rd chemo session right around the next corner, I was sure I was going to make it without having one installed.

And then I somehow lost 8 pounds in just a couple of days. It was the Thursday before labour day, and I was scheduled to book into the hospital on Monday night for chemo session #3 commencing Tuesday, just 4 days away. My RO and I had made a deal and shook hands on it a few weeks earlier whereby if my weight fell below a certain level, then I would have a feeding tube installed.

Now all of a sudden, I was 8 pounds under the minimum weight, and I remember so clearly her words when she said that it was my choice, however on Monday - 3 days later - if I had NOT regained those 8 pounds and was still below the minimal weight level, then she would cancel chemo session #3 just as sure as God made little green apples!

I went home and stewed about it. Already reduced to drinking my own milkshake concoctions due to the pain swallowing, I knew there wasn't much chance of regaining the lost weight, and it boiled down to which of my 2 goals was more important to me?

Luckily, I made the right decision and had the tube installed the following day. They kept me in the hospital and made sure I was heavy and healthy enough for the final chemo treatment.

She knew how important that 3rd treatment was to my mental preparedness, and knew exactly what button to push to gain my compliance.

So how did it all turn out? What nobody prepared me for was the discovery that the pain didn't didn't stop, or ease-up for that matter, even though the radiation treatment was over! In fact, the pain continued to build for the next month or so before showing any sign of abating whatsoever, and had I known that was going to happen, there would not have been any argument from me.

I must have jinxed the process along the way because of all people to become 100% feeding tube dependent for life, why did it have to be the guy who protested it so vehemently in the first place?

The combination of chemoradiation and surgery resulted in my ending up with extreme xerostomia (dry mouth) due to zero saliva gland function, severe trismus (lockjaw) with only a 13mm range of motion between my upper & lower jaw, and reduced epiglotis functionality which meant I could not swallow anything other than fluids.

Yes I could swallow soups and other liquid nutrition, but it would still require me to have a feeding tube in order to maintain sufficient daily caloric intake. That's an awful lot of soup to eat every day - gallons of the stuff - and how long would it be before even the thought of another spoonful of soup would turn me off eating altogether?

In view of having no saliva to fight food related bacteria and almost zero access to perform routine oral hygiene, I decided it was one of those "all or nothing" situations, and with great reluctance decided I would rather retain my dentition as long as I could, and forego any further oral feeding in order to minimize the pace of dental decay. That meant I must rely solely on my feeding tube.

That was 7 years ago, and I haven't swallowed a single morsel of food orally in all that time. Things went really well for me and my tube until only recently, relatively speaking.

Shortly after having it routinely replaced in January of this year (usually every 9 - 12 months it is replaced), I started to suffer bloating and nausea mid-way through a feeding, and it became a horrific event to complete a meal that took 2 hours to feed and another 2 hours to recover from.

Finally I returned to the hospital to check it out, and discovered that the tube had moved from my stomach into my duodedum which was the cause of the debilitating nausea. They replaced that tube and everything was just fine for about a month. Then it happened all over again, and the tube was replaced for the second time in as many months. A few weeks of normalcy, and then wham, the tube is replaced again!

Believe it or not, I went to bed one night and woke up 2 days later in the emergency ward suffering a very severe blood infection on top of the fourth bout of pneumonia since December 2011. One full week in hospital, a couple days at home, and I'm back a few days after that for yet another tube change.

At this point we are all frustrated and pretty well fed up with feeding tube drama, and I inadvertently learned from the Angio-Tech who was assisting the Radiologist that there was an alternate type of feeding tube apparatus that I could select if I was so inclined.

It is manufactured by Kimberley-Clark, and comes in 2 basic styles: one a similar looking external tube and connector/valve arrangement to what I was used to, or the other, a low profile unit about the diameter of a half-dollar.

Where these two units differ is internally - how they were kept in place. Instead of a foot or more of coiled tubing in your stomach, these new styles are retained by a small balloon that is inflated on the other side of the abdominal wall and that is what keeps them in place.

No more gauze, stat-lock fixation devices, or Tegaderm bandages in my future with any luck! The bonus is being able to take a shower without wrapping myself in five or six layers of saran-wrap, or being able to go swimming without worrying about seepage or any feeding tube consequences.

I understand they have been available for a few years already, and why I didn't learn of it earlier is a mystery to me. And so, here I currently sit wasting away until I receive my first "Mic-Key" low profile device and have it installed, hopefully within the next week or so.

Until then, I'll try to cope with the volumous sweating, bloating and nausea that accompanies each meal and consumes about 12 of the 24 hours I am alloted every day.

I think it is much wiser to simply get the thing installed just in case you find it necessary, as most patients do.

Good luck and good health in the future!

JT