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

Katrina,

Have you seen a speech pathologist (these are the folks who can help you improve your swallowing) to see if they can help you with your swallowing and give you some exercises to do. I have also had problems with esophageal strictures--they can happen even if you are swallowing liquids, they don't just happen ebcause of not swallowing they are a reaction radiation that some of us have worse than others.

I've had to have my throat opened three times (the first time it was completely closed up)and I need another dilation soon. Often you need to have the surgery repeatedly, but there are exercises you can (and should) do to build up your swallowing muscles as well. If you are having a hard time swllaoing your own phlegm and saliva, that's a sign you probably need another dilation.

Whatever you do, do't give up! I don't know why this is so hard for some of us when for most people swallowing returns without these problems, but there is more and more research being done on rehabilitation of this problem (the surgeon who does my esoph. dilations is at a major CCC and tells me this problem is more common as radiation is recommended for more and more oral cancer patients and is more effective at getting the cancer--likewise strictures ahve become a bigger problem. A speech pathologist I saw who is an expert in dealing with swallowing problems for oral cancer pts. told me that the problems seem to be worse with IMRT but my local ENT says that isn't true.)

I wish I could tell you I was off the g tube at last--after the last diulation I got so I was getting half my calories orally (though almost all liuquidor yogurt/pudding texture stuff) before my throat seemed to tighten up again. I am determined that eventually I will get off the tube entirely and am doing exercises failry religiously towards that end. Please send me a private message if you want some support through this.

Nelie

Pam,

Obviously that will depend upon when Wayne says he can't.

For me, and I didn't have the Peg, I think I quit around the 20th to the 25th rad. I went totally liquid and I didn't keep up with my daily goals. I didn't have the benefit of this site until 2 weeks post Tx so that didn't help me realize how stupid I was.

Word to the wise and I'm sure you have heard it before...make him get a minimum of 48ozs water and 2000 cals "food" each and every day and when the Tx ends get him to increase those amts as soon as possible.

Good luck, you two.

Pam, you should let Wayne read about some of the eating issues that others on this board have while going through treatment...........then the PEG may not be such a big deal to him! He's lucky to be doing so well. IMRT is not as difficult for most patients, he may be able to eat throughout his treatment.

Thank you, everyone. It is getting harder for him but, he is very determined to eat as long as he is able to.
He does drink a lot of fluids everyday, so much that he is up about 4 times a night in the BR.
For dinner tonight, he had filet mignon and a baked potato, ate every bite. It does take him about twice as long as it usually would though.

The thing that seems to depress him most is that he does not have the energy to do as much as he normally would. He knows it is because of the cancer and the treatments, but, it still gets him down a little.

Pam

Pam,

His lack of energy is from the rad's toll on the body and it may have already affected his thyroid. I'm sure his docs are on top of his thyroid levels but just ask to make sure. Normally the thyroid takes much longer to show signs of rad damage but inquire anyway.

I was one weak puppy for months post Tx and I still don't feel as strong as I was before so tell him to accept it for now because there's little he can do other than follow his docs recommendations.

I'm sorry I misread your signature. I thought he had finished his rads but I see he's only completed 20. Forget the thyroid, it's just the rads most likely. His body is being attacked and it's fighting back and that takes a tremendous amount of energy and remember at 2000 cals he's probably just giving his body enough to maintain his weight under NORMAL circumstances and right now his body is burning more fuel to sustain the war. Tell him to hang tough and sleep whenever he feels like it.

Pam,

I know exactly how your husband feels about the PEG. I hated the thing from day one and was determined to have it removed as soon as possible following Tx. I realize it was a necessary evil but I still hated the thing. I must have gone through 50 rolls of adhesive tape which eventually pulled out every hair on my chest and stomach over the weeks. I then developed a rash/irritation all over my stomach and chest area from the tape, etc., etc., one aggravation after another. Also, a word to the wise, tell your husband to be careful and do not cough if he has the tube uncapped! I did that once, but only once. What a mess that made!

I had to start using mine around the 4th week of Tx which is about where your husband is now. I had to use it from that point for about 6 weeks until about 3 weeks post Tx. It was a happy day when I finally got rid of the thing.

Bill D.