I am trying to decide when to have my PEG tube removed: sooner or later. I finished radiation on 07/09/09 and was unable to swallow at all due to an undiagnosed esophageal stricture. The stricture was finally diagnosed and successfully dilated.

I have been on 100% oral intake since Feb 01,2010. Unfortunately, the oral intake is still mostly Ensure liquid suppplement due to problems with xerostomia and my tongue being tethered due to scarring. I do 1 or 2 servings of solid food a day,( 400-500 calories) just to keep the swallowing going.

How far along are most people with their solid food intake when they have their PEG tubess removed? Is there any risk in being this dependent on Ensure for removing the tube? Should I wait to have it removed? Am I waiting for anything in particular?

Thanks for your thoughts!

Mike

age 53 TxN2bM0 stage IV tongue and 2 nodes, non smoker, non-drinker, heavy plastic wrap exposure 25+ years, 2 surgeries, neck dissection, 60 GY IMRT+ cisplatin X5 completed 07/09, new primary on tongue 11/09, biopsy got it all, praise God!

Mike

Well, if my experience with a PEG is any guidance, your PEG tube is fast approaching the end of its useful life. I am now on a 6 month replacement schedule after going through 2 PEGS since March 2009. Both tubes started to leak between the stomach and intake valve. I had only used Jevity in them as even Ensure was a little thick for the gravity bag and had to be syringed.
Unfortunately, I can't give you any more advice based on experience since my scarring and the amount of base of tongue taken out don't let me do any food, either solid or liquid by mouth. If I ever get to your stage again of being able to do 100% oral intake, I'd get my PEG out after two weeks but that's just because I hate it and two weeks seems long enough that 100% oral intake was not a fluke. Congratulations on being able to swallow.
Charm

Once I had been eating orally 100% I called the gastro and had my PEG removed. Only after I had done that did I find out that my MO had a different idea and wanted me to keep it a bit longer. OOPS. But too late, it was gone. However, depending how your weight is holding up and how your nutritional intake is, I would say to wait until you are sure you can get enough calories orally. After I had my PEG removed I lost an additional 20 pounds, so it was obvious that I was not getting enough nutrition orally and should have kept using it for a bit longer to supplement with Ensure.

Thank you Charm and Carmen.

Ya, I mean as long as they can keep the shelves at Krogers stocked with dark chocolate ensure plus, I can get the calories.

Carmen, I am curious about your cancer treatment. Why did they give you radiation?

I got it because of my 2 malignant lymph nodes.

Thanks,

Mike

age 53 TxN2bM0 stage IV tongue and 2 nodes, non smoker, non-drinker, heavy plastic wrap exposure 25+ years, 2 surgeries, neck dissection, 60 GY IMRT+ cisplatin X5 completed 07/09, new primary on tongue 11/09, biopsy got it all, praise God!

My docs have recommended you be able to sustain yourself without any weight loss for 2 months before peg removal. This is taking everything by mouth, foods, meds, and drinks.

Mike, Good question. It was recommended by my team of Dr's who felt they wanted to take the most aggressive approach. There was some concern after the CT/PET of 1 node being involved - but they really thought it was from the surgery and not cancer. Anyway, it was decided to beat the C with a large club rather that a small stick - you only get one chance to get it the first time around - there is no 2nd first time. I completely concurred. Treatment definately wasn't a walk in the part, but I am glad I went that route rather that the wait and see route.