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

Please check out red-light therapy. A little wand is about $20. You wave it around the back throat area a few times per day. I do believe it helped me greatly.

@thomason While the medical community officially does not recognize red-light therapy, primarily because they have never done a study, it is clear from these pages and years that this appears to be a significant help in healing of the mouth and throat. Apparently we need more doctors with throat cancer to get a study done. When sterilization was first introduced to the medical profession, many fought the idea. We even had a president die from infection because the doctors didn’t believe in germs and bacteria.
I for one give a green light to the red light. Good healing.

Please check out red-light therapy. A little wand is about $20. You wave it around the back throat area a few times per day. I do believe it helped me greatly.

@thomason hello, was your doctor onboard about this red-light therapy?

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

@cskippy He told me to "go for it." It still took almost one year to regain my swallowing and ability to speak.

@thomason Did you go to a medical clinic or to a health & wellness / spa?

@cskippy No. I researched about red-light therapy and the amazing results with it. After a few swallow studies, it showed the flap that keeps food from entering the lungs (epiglottis) was not doing its job. After that, I ramped up the red-light therapy. The last swallow study showed it was working as it should--thank God. I remember the doctor saying it was "astounding" that it was working so well "now." This was the same doctor that evaluated the other studies. Being human, I cannot say with 100% certainty that the red-light was the reason but cannot rule it out either. There are articles about this topic, especially on JAMA. You can purchase a little red-light wand on eBay for around $20.