To tube or not to tube....

D Lewis said:

I got one

I tried to get by without a feeding tube, but it just got too painful to swallow. I wasn't getting enough nutrition and I was becoming dehydrated.  I might have been able to eat if I had increased the pain meds, but I made the choice to get the feeding tube about three weeks into my eight week chemo/radiation regime, and take less pain meds.  Pain meds make me feel ill.  The tube was easy to use, I gained weight immediately, and I felt empowered because I was able to feed myself unassisted.  It's a personal choice as to what method will work best for you.  I never 'lost my swallow' because I kept water and dilute green tea with me always, and sipped constantly.

Deb

There is more than one kind of feeding tube.  I got the PEG, or percutaneous endoscopic gastronomy tube.  It is an outpatient surgical install by a gastroenterologist, and can be easily removed at the doctor's office.  They go in, endoscopically, through your mouth and down your throat to put it in place. When you are done, they just yank it out.

There is also a G-tube, which requires a more extensive surgery to put in place, is held in place by stitches, and has to be surgically removed.  For some surgeons, this is the only type of feeding tube they know.

Deb

....they put it in before treatment mostly because I didn't have any affordable weight to lose.  I made it through rads without using it, however after rads I had another 3 blasts of chemo......that's where it paid off.....my mouth turned to hamberger, and I couldn't even get plain water down.  As it was I lost 16 lbs.....

It seems a few get by without it.....most end up getting it somewhere down the line.....hydration and nutrition are SO important during treatment, I like having it already in and ready when I finally needed it.

p

When my husband was diagnosed with laryngeal cancer, our doctors wanted a PEG tube just in case.  We were told very easy to install and very easy to remove if not needed.  Thank goodness we went with the feeding tube.  He had no weight whatsoever he could afford to lose and in less than 2 weeks he wasn't able to swallow at all.  Although we had a therapist coming to the house to work with him on swallowing it didn't help.  Found our after radiation and chemo treatment during surgery that his throat was closed off from the radiation.  They had to reconstruct his throat.  But 6 weeks after surgery he was able to eat so the tube was removed in the doctor's office.

Then when he had to undergo a second round of radiation in basically the same spot, at first the new oncologist was going to wait on the feeding tube but after looking at how skinny my husband was, he decided to once again insert the PEG tube.  And yes once again it was needed but thankfully they were able to open his throat without surgery. 

You will find many who made it thru without one and then again many who didn't.  We were told upfront it was easier to insert before radiation started and easy to remove. 

Wishing you the best -- Sharon

Skiffin16 said:

PegLess in Florida

Like mentioned....

You have found one topic that usually gets everyone's attention and thoughts...

You know my history, STGIII SCC Tonsils and a lymphnode. I had a total of sixteen weeks of four types of chemo, seven of which was concurrent with daily RT. I was a very healthy 275# going in, dropped 35# over the course.

But, I had it fairly light with minimal complications...

Around week 3 of RT, and ending around 4 weeks post RT, I decided on Ensure Plus and meds to get me through, along with plenty of water... OH, and also a few sliced peaches because they slid down the throat easy and get my swallow muscles working (which you want to do(..

I chose this route (Ensure Plus) as to me, it had the most bang for the buck (350+ calories versus solid food) for the least amount of pain or discomfort.

I would set up everyting first, a few cans of Ensure, two glasses of water, liquid numbing solution (oxy/hydro),  DelMonte Jarred Peaches in Light Syrup, and a 1/3 glass of water with a crushed Percocet..

I did this a few times each day, trying to get in 2,000 - 3,000 calories.

My MD's weren't concerned with me having a PEG.., probably becasue I didn't look to be malnourished, LOL.

They advised me it was an option if it became needed..., it never was.

But..., If I was prescribed one, I would have had it inserted no questions...

Some on here swear by the PEG and are sure they wouldn't have survived without one..., and that may hold true.

If you have health issues, eating problems already, low pain tolerances, low in weight going in..., a PEG just might make things easier for you, and possibly even necessary for you.

I'm just not one that feels that everyone should mandatorily have a PEG inserted, just incase... It isn't always needed, and many here have proven that.

Again, I'm not advocating going against what your MD's prescribe, they are the professionals.

John

They left mine in following surgery. Even with it, I lost 65 pounds. Always managed to keep swallowing but was happy I had the tube when times got rough. 

My favorite topic. lol

Personally I was lucky that my doctors were aligned with the do not peg up front. That is all of them: MO, RO, and ENT. I found it far more empowering to maintain my ability to provide nutrition and liqiuds orally. No lie, it hurt like hell trying to swallow but I did NOT want that thing hanging out of me. And far too many here "forget" various issues related to having the PEG. Yes, none serious or life-threatening but nevertheless it is not an entirely non-event.

I weight to offer up to the PEG gods so no issue losing weight. Each of us has our own circumstance and a PEG may be very smart to do if you are light on weight or otherwise not 100% going in.

Listen to the doctors, ask the smart qestions, and decide what is best for you. Good luck, Don

Guzzle,

I had 2 PEGs, one terrible and one great.  I always managed to drink one meal a day and most likely could have managed without a PEG. 

I read the book of “Skiffin” where the hero drinks lots of water every day to maintain his swallowing ability and I did the same. I am still drinking lots of water and I still swallow very well.

There is no doubt that a PEG is a lifesaver for those receiving the worst side effects from rads and chemo, but generally, if you are on top of the (ever changing) situation ,you will most likely have a window of time to decide.

I have not read of anybody (here) dying because they did or did not have a PEG, but I have read about those who required one installed during treatments.  Until you are in it, you are only making (best) estimates on how you will (your body) reacts.

Good luck,

Matt

Matt pretty much "pegged" it....

You can only have so much control on the situation, ultimately your body is in charge.

I've seen small, frail, older ladies sail through with little to no problems, and on the other side, big, burly, young manly man types, buckle.

It's no disrespect to them or any sign of weakness..., it's purely your body in some cases that dictates your need.

Some can handle pain more than others, and some simply feel that a PEG is one less thing that they need to deal with... (meaning some don't want one, and some do want one).

Pain, the mind and tolerance are all unique to each of us... Some can handle it, some can't, some don't want to if they can get around it.

In the big picture of treatment, recovery and survival, you do what you have to do to get through... The only right decision is the one you make, can live with, and adjust if you need to.

Each of us here can and should only convey our expereinces, I'm not going to tell anyone yes, you should or should not get a PEG. For some scenarios,as I mentioned already, I can suggest you should talk to your MD's about it.

Your MD's are the best source in most cases through their preference and experiences and knowledge.

~John