Hi again,
I'm now 10 days out from my last radiation treatment but still cannot handle the thought of eating through my mouth. I've continued to take nourishment through my feeding tube. Can any of you who have had the tube installed tell me how long you continued to use it after your treatment ended and how long a period it took until you had the tube removed.
Any suggestions on how to re-introduce feeding through the mouth? Thanks. - Shel

Shel, at the end of rad/chemo, my mouth was full of sores, and infected to boot, so the thought of eating didn't even compute. I used the PEG for a month while gradually beginning to eat normally, which got easier as my mouth healed and the taste began to return. I don't think you need to be in any big hurry at this point. Start by drinking water, then broth, then thicker things, and gradually work up to real food and you will be fine. One day you will realize you haven't used the PEG for a week, and you can then call to have it removed. Don't rush it because especially now you need good nutrition to heal from the radiation assault on your system. Always remember that every patient is different. You will most likely know better than anyone when you are ready to eat by mouth. There is no hard and fast rule about when anything should happen, so don't worry about that. I was in one heck of a hurry about everything just because I am that way. Doesn't mean that is right (grin). Congratulations on making it though!

Shel,
Eating seams to be a major issue for a lot of people here . My husband hasn't gotten very far still ensure oatmeal and soup I year past treatment. I think the worst thing is the commercials he obsesses about what he can't eat but amazingly he gained back all his weight . It appears you don't have to eat much to gain hang in there and be patient.
Congrates on making thru all the stuggles so far and take care. Diane

Hi Shel,

I finished radiation treatment in early Nov/03 and kept the tube in until early Feb/04. Although I was able to eat moist soft foods I needed to supplement my intake to make sure I was getting enough calories and vitimins to sustain myself. I was injecting 8 cans of Jevity per day.

Now that I have been without the tube since Feb. I have lost some weight. It's diffucult to eat enough in a day for me. I know I have to be more dilligent in making sure I do. It's diffucult for me to swallow and liquid tends to run out my nose whenever I drink milk.

Don't be in a hurry to remove the tube because your treatment has ended. The question is "Can you eat enough to allow for healing and to sustain your normal needs.

Sincerly, Dan Bogan

Hi Shel,
I ended radiation July 10th, 2003 and had the tube removed in December. I used the tube every day for at least 4 months after radiation ended and I needed that. For at least the first month after radiation I didn't eat anything much by mouth. It hurt to much and I didn't want to. I drank water all day, then tried some soup and milkshakes after about a month. I am almost 11 months out of radiation and I don't have to think before I eat quite so much. I don't eat chips and stuff like that any longer, not because I can't but because it's just to much work. I still have saliva, but it's changed and it doesn't break down the food as well. I went to Applebee's last night after my daughters school play and had French Onion Soup and the Southwestern Steak skillet...........with the onions and peppers. I cut the steak in smaller then usual pieces and I can manage it fine. It get's better Sheldon. You're at the toughest period right now, the first month after radiation. I remember sitting there waiting for it to "get better". It didn't. I read something on this board that said not to measure the improvement in days but in weeks and that is when I started feeling better. There is very little change from day to day, but from week to week you can see that it's getting better.
Congrats and good luck with it all.
Minnie

Hey Shel,
My husband is almost 3 months post treatment and is just now in the last 2 weeks that he is taking in things by mouth...water, some soups, puddings (although he really doesn't like what anything sweet tastes like). He really can't taste anything after the second bite, so it's hard to eat, but the doc told him it's all about using the mechanism and so not about taste for quite a while. Doc said last week he has to be eating completely by mouth and not using the tube for 2 weeks straight before he will let him get it out, so now we are trying to do Carnation Instant breakfast, oatmeal, soups and BoostPlus to get enough in him. It is a much slower process that Dan was expecting, but each week does get a little better, but not for a couple months after treatment.
Hang in there!!
Debbie

hey ther,

i had my peg for about a year after treatment. during that period i had 9 months of eating theropy... still eating was difficult, so after another 8 months i had my esophagus streatched twice... it went from the size of a toothpic to about the size of a nickel. eating is much easier now, but i still need sauces and prefer things that don't require awhole lot of chewing. i eat everything is sight.

during the peg period, i went thru 100 cases of 24 cans of ensure and maintained my weight just fine. that works well when we need it.

the docs hadn't allerted me to the eating thing and i had expected to be eating 2 weeks after treatment.. boy was i surprised.

cu,
larryb

Please don't rush to get the tube out just yet. I am 4 months past radiation and lost some function in swallowing and of course I have a much drier mouth. Eating is still difficult for me, but I don't have much tongue to manipulate food with. You don't realize how much you use your tongue until it's gone. I'd start with yogurt, pudding, thicker liquids, and milk.

Hang in there!
Lynn
Lynn