My husband is six weeks post IMRT and has had the PEG for eight weeks. He is able to eat small amouts of food, but has no appetite. How much of the no appetite is the nutrition from the PEG or just the loss of appetite. He is getting all his nutrition from the PEG 2800+ calories. He wants the PEG out next week when we go back to Houston, but we aren't sure about how to proceed. Do you wean yourself off the PEG by eating more foods? Any ideas on procedure? Do you bite the bullet and get it out and force yourself to eat? Ideas, please

I have had my Peg since January & am getting it out tomorrow. (I am 11 weeks post IMRT). I started out at 124 lbs so couldn't afford to lose much weight. I am now at 113 and am eating small meals (which takes forever). A week and a half ago, I decided I wanted to get rid of PEG by 6/1 so I just started acting like I didn't have it to see if I'd be OK. I realized that I could eat more than I thought if I HAD to. Sometimes it's hard but I want to get rid of the PEG-I think it will mentally help me move on from this ordeal. Not to mention, the cap pops off some when I'm playing w/ my 2 year old & then I have "food" all over us. YUCK! So, have your husband slowly wean & act like the tube is gone. He'll know if he's ready or not. It won't be easy to not be able to rely on it.

DCS,
I kept the PEG until I was sure that I could get enough nutrition without it. In my case, like that of Brian Hill's, I needed it a long time and kept it for 10 months. Obviously most people can get rid of the PEG earlier, but there is no reason not to use it to supplement your diet if you still need to gain weight unless and until you are able to get sufficient nutrition from eating.

Good luck,
Danny G.

My husband has been on the peg for 6 wks. we are 3 wks out of treatments. He has 5 cans of the formula and 6-8 glasses of water per day.(all through his peg of course) Our Dr. told us when you can eat 500 calories. decrease a can and so forth. We are still taking baby bites of food, but that is our goal to work up to 500 cal per day and increase it. It will take a while I'm sure. One day at a time or one bite at a time!

It will take time but those baby bites are significant steps forward. Great news. Regards JoAnne

DCS,

I had a PEG from just prior to start of Tx until about 5 weeks post Tx. I hated the thing so much that it really gave me incentive to get back to eating by mouth as soon as possible. I actually had made an appt. to have the tube removed 3 weeks post Tx but backed out at the last minute. I think I was starting to develop a dependence on the tube and that really got me to thinking. I did not want to get dependent on it or anything else as I just wanted my life back as I formerly knew it. I simply forced myself to eat all as necessary by mouth, pain or no pain. Once I did that for a week I made another appt. and ended up with the PEG removed a week later. I actually lost about 8 more pounds after it was removed before I finally bottomed out at a total loss of 40 pounds, 145 vs. 185. I recall being quite nervous on the way home wondering if I had done the right thing. I panicked at the thought of possibly having to go back to the hospital to have another PEG installed if indeed I had made a mistake. I did see how easy it could have been to become dependent on the tube and not have to worry about normal eating but quickly snapped out of that mode.

Bill D.

Peg tubes are wonderful allies. Mine came out March 9th and TX ended in October. Doctors and wife ganged up on me and wouldn't let me lose the tube until I could stablize and then gain at least 4 pounds (the scoundrels, at the time 4 lbs. seemed an insurmountable task). It was a great supplement though even after (I thought) I was eating well. Had a follow up visit today and have actually (finally) gained 2 lbs. on my own!! My point to all of this is it takes time but with focus there is a return to "normal" (whatever that is-LOL)
In response to DCS, I wouldn't "bite the bullet" and take it out on a whim. After being challenged I wanted to prove to myself that I was indeed on the right track prior to having it removed. Ladyjoe, Baby bites are a beautiful thing!!!

Keep at it & best of luck,
Steve

Rob is 5 weeks post treatment and has been using his PEG since april 15th .I wonder if he uses it because it is easier than eating but he has started to eat something at least once a day.The dietician says he cant have it out until he is eating and drinking normally.

I HAVE HAD TONGUE CANCER AND THE RIGHT SIDE OF MY TONGUE AND LYMPHNOD I HAD A NECK DISECTION I HAVE BEEN ON THE TUBE SINCE SEPT OF LAST YEAR. IT IS VERY HARD TO SWALLOW. I HAVE HAD MY THROAT DILATED I DO NOT KNOW IF ANYONE ELSE HAS HAD THIS BUT RADIATION CLOSES YOUR THROAT AND IF YOU DO NOT USE IT IT WILL SHRINK GET NARROW IT IS A MUSCLE I AM GETTING VERY DISCOURAGED BECAUSE I WANT OFF THE PEG ANY SUGGESTIONS!!! I HAVE ALOT OF PHLEM IN MY MOUTH. I AM BARELY EATING SO IF ANYONE CAN HELP ME I WOULD APPRECIATE IT

My husband hasn't had to use his PEG tube yet. He has now completed 20 (of 37)IMRT's. His throat is sore but, not real bad yet. He is still eating and has maintained his weight so far.

His Dr. told him that he (Wayne) can decide when he wants to have the PEG removed after treatment.

Of all that Wayne has been through, it is this tube that he literally hates the most. Says it bothers him, is uncomfortable and at times just makes him plain grouchy.

I do have a question though,about when should he expect not to be able to eat anymore?

Pam