How do I know when I can get off my feeding tube?

Thanks Lollie,
I will try to think more positive and not judge myself. I hope you and your husband are doing well now.
Al

Hey Thomason,
I am trying some soft foods but they need a lot of olive oil or sauces to get it down. I am still getting sores in my mouth so I will ask my doctor about red-light therapy.
Thank you for your prayers.
Al

Great to hear you are doing better. I know it was a tough hill to climb. 👍

Doing good. Better every day. Thanks.

Ensure tastes better than the Kate Farms but for me Ensure had too much sugar so I went with KF and got used to it after a while. But yes find something reasonably nutritious that you can drink while you gradually eat more foods and you'll be on your way

Hi JG,
I've been toughing it out since 06, and many of the suggestions here I haven't ever heard of. They've apparently come a long way in treatment. With a sister, a nurse practitioner, who has undergone the same cancer, I now see how worrisome it can be about what is coming next. I don't recall how long I had my tube in, but it was about 8-12 weeks. Eating was difficult, and I never went anywhere without a bottle of water. Apple skins and cake crumbs were the worst due to the problems with swallowing and the risk of inhaling them. What I can say is it will get better with time, if for no other reason you will learn to navigate the challenges. Good luck!

I'm just coming to the 4 month mark on my last radiation treatment. My oncologist team does not give feeding tubes to HPV throat cancers. I was never given one and I'm very happy now. I have no problems eating and swallowing. Bread is hard at time due to my dry mouth, but with the little water I manage it. You have to endure some pain as we all know. That pain gets less and less as time goes on. I understand the longer you're on a feeding tube, over time relearning how to swallow becomes a problem? I don't know though, I don't have M.D. behind my name. Good luck.

@harleytiger
congrats on your milestone.
swallowing excercises are detriment.

I am 3 months post treatment (radiation/chemo) and have had my PEG feeding tube in now for 4 months. I have set a goal that my tube will be out by the end of January. I am making myself consume the calories however I can. I am now on half feeds and I am maintaining my weight. I plan to reduce by 1 box of feeds (currently on 4/day) each week until I am only eating orally. I have been told by the Nutrition team that I will need to maintain my weight with zero feeds for 2-3 weeks before they will remove the tube. It isn’t easy but you need to make yourself eat. Lots of water or juice to wash things down. 2-4 Ensure Plus Calories per day if necessary. Tons of butter and sauce on everything helps foods go down. Experiment. Try everything. I started trying kids foods like Alphagetti and Mini-ravioli! You have to set a goal date! I can’t stand this dumb tube, it has been worse than the cancer! Good luck.

Hey Al Gil
It sounds like you’re doing better than I was doing at 7 months out.
My inability to eat wasn’t from pain but from the tightness and inability to swallow.
I seen other patients getting their pegs removed and others with no peg and there I was still dependent upon the peg for nutrients!
My doctor said for me not to worry about being on the peg feeding because everyone is different and I was hit very hard with treatment.
Anyway, one day I was scheduled to get my port and I made my mind up to have the peg removed as well. I was mentally prepared to force myself to eat.
Granted, my meals were oatmeal for nearly a year but at least I got my throat working.
You will know when you’re ready.
Jody