Anyone able to avoid PEG and feeding tube?

shorecat99 said:

Hi Brian
I just joined the site looking for info on that subject. I'm in week 5 of 7 weeks treatment and opted not to get the tube. It seemed too unnatural for me and I worried about risk of infection etc. My radiation doc said as long as I can take stuff orally, he agreed with my decision as it would keep my throat muscles working correctly with less chance of long term problems in that area. Started at 180 lbs and am now at 165. In the beginning, taste was just "going away" so I still ate regularly. Later, taste changed to none, saliva turned to paste and yet later, taste changed to disgusting with most things I was familiar with, which made me not want to eat or drink. At my lowest point, I felt dizzy when getting up quick and knew I pushed it too far. But that was 2 days ago and it was sort of a kick in the head! I have increased my intake and the weight stabilized over the 2 days and hopefully will increase now. I had to keep looking and trying different things and I found the following to be most tolerable. It seems the plainer the better and nothing too hot either. Light soups like chicken or potato or tomato.. Farina or cream of wheat. Also, strawberry powder in milk to which I sometimes add protein powder. Many people would probably prefer chocolate but strawberry is my preference. I can actually taste that somewhat still. Premixed protein drinks seem to promote more pasty saliva and don't taste good at all to me but I am forcing 1 or 2 a day as they do have the nutritian we need and I stocked up on many of them in the beginning based on a doctor's advise. So a little is pleasant, a little disgusting but I do have high hopes to make it through without the tube. Best of luck in whichever way you decide to go.

BrianKrashpad said:

no tube here!
I was really opposed to doing a tube, just wasn't for me. My docs, in particular my chemo doc, was supportive. I was upfront about my opposition to it. I did lose a ton of weight, but I was at LEAST 30 pounds overweight (40 is probably more accurate) to begin with, so I figured I had a "cushion." Even with losing 45-50 pounds, my lowest weight was still in a healthy range for my height and frame.

So now, I'm a lean, mean, rockin' machine. It can definitely be done if you want it bad enough and you don't have too much to deal with from surgery or other problems (like nausea, which I never had). I did about 8 weeks of both chemo and radiation. You can always try and if it gets to be be too bad, switch over.

Goalie said:

Not 100% anti-tube
This is DrMary's husband (see 12 April) and, as she says I didn't have a tube and have been against one if at all possible.

HOWEVER, I have come to agree with Sweets and some of the others that toughing it out is not possible for some and inadvisable for many. There was someone on here whose mother was 105 pounds and they were considering a tube. Get it. There are others who really got worked over in the throat whether with rads or the knife. For them, they should get it. There are others for whom wanting is badly just isn't going to be enough. They should get it.

HOWEVER2,I do not think everyone should just blindly go in for this and take it as if it were an easy prophylactic measure with no consequences kind of like opening a home equity line you never hope to use. Getting the thing and keeping the thing can have real ramifications as a few discussion here have pointed out. Obviously, any time you open up your body and stick things in it and then leave it open, there is a cost and a danger. So be very careful in making the calculation. And then do what you think is right and what you are comfortable with.

I was lucky, I made it though it was hell for some weeks swallowing and forcing it. I lost a bunch of weight that I didn't have to lose because it was all muscle. But I have recovered faster than I would have with a tube (I and the doctors - including DrMary - believe!) and this was right for me.

Now I have to sign off because I have to go play in a hockey game.

Best of luck, Doug

BrianKrashpad said:

full sentences, sweetie, full sentences...
That's why I didn't just say "it can definitely be done if you want it bad enough"-- the sentence was CONDITIONAL and went on to say IF one wasn't having too many other problems to deal with. Obviously, if you're rad-burned too bad, bleeding, throwing up, it won't happen.

So what I inartfully attempted to say was if you aren't dealing with too many other issues that conflict with keeping off the tube, it can be done. But that conditional "if" will necessarily take a lot of people out of the group that can avoid a tube.

Sorry, my apologies.

Skiffin16 said:

LOL...Always a Hot Topic
You are correct Brian...

You are correct Dawn....

Just as the old standby that all of us understand, "Everyone is Different"....

I too didn't have the PEG, it wasn't an issue, I didn't avoid or turn it down...it just wasn't a concern from my MD's, so it wasn't for me.

I didn't have complications like some on here have...

The option was always there I'm sure if I did become ill and need it.

Should I have gotten the PEG because I might have needed it...some say YES others NO.

If I was like Dawn and others whom are already very light and small in nature. It goes without saying that the PEG should be inserted prior to treatment. If you have underlying conditions or a history that might cause you to have problems during treatment, also probably a very good decision to have one inserted.

But like myself whom had extra pounds going in, rarely sick, not on any meds, and generally in very good health. I don't think it's a given that I should have had the PEG inserted.

Yes, there's always a possibility that I reacted totally negative to treatment, couln't eat, got sick...whatever and would have had to have a PEG inserted during treatment.

All of that is hindsight, I didn't have the advantage of this forum, or others history prior to treatment. But in reality, looking back, I still don't think I would have had the PEG unless my MD's felt I needed one.

JG

Rubytoos said:

Tube
Hi Brian,
I was diagnosed on Feb. 8, had tonsillectomy Feb. 11. I had the PEG put in the next week. The following week had to have 8 of my 2nd and 3rd molars removed - My mouth and throat...ouch. My first rad treatment was March 22. I could still taste food for the first 15 treatments, then tomato products started tasting like pennies, my beloved iced tea tasted like wet dirt smells, chocolate was awful, etc. My doc had told me that the tube would become my best friend. And he was right. Although I hate having to use it I'm glad I have it. I'm not a large person (116-122 lbs) and have managed to keep my weight relatively constant. The tube is really not all that bad, I pretend I'm having lobster and shrimp, not Isosource 1.5 Cal. (Nestle Nutrition makes it.) BUT if you don't NEED the PEG...well there you go!

Summing up, it is not bad having this device, and it is a very good thing I have it for the good nutrients in the cans, I mean it it LOADED with good things. (And it tastes like crap) But as soon as possible.....who wants to come over for a seafood party extravaganza?!!! I wish you well and hope that you can continue to eat normally and all of this goes by quickly for you.

Ruby

Greend said:

more info
I stated I made it through without the peg. I failed to mention that I was overweight. I weight 240 lbs when I started. I remember telling the Dr that his diet was better than Weight Watches as I fell below 175. ThenI started to worry because I couldn't gain any and I bottomed out at 137. Had I not been overweight I don't think I would have made it. Weight should be around 175 - 180 and I have not been over 165 in 15 years.

Guess I'm saying - if you have the extra weight then it is probably ok with no tube (if Dr says so), if you are normal then I might reconsider.