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

I agree with everyone that it takes time to be comfortable with your caloric intake before you can fathom not having your feeding tube. The transition can take months. I began focusing on introducing eating by mouth a month post treatment. I started with pureed green vegetables, Cream of Wheat with plenty of half& half, water, and morning coffee (again- plenty of half&half!) I graduated to soups, steamed veggies, fresh pasta with olive oil & veggies, fish, and blueberry pancakes with real maple syrup! Some things just didn't work: yogurt was too "coating-ish", most meats (teensy bites) tasted and felt like sawdust, and breads were like a dough ball in my throat. I still always have water around when eating (and always!). Sugar tastes weird and not worth the empty calories. I also supplement with high calorie, and now high protein Boost. I had my feeding tube removed after this 4-5 month transition. It's been a year since removal, and I've slowly gained back 8 of 30 lbs. lost. I can happily eat fresh salads, vegetables, and my husbands famous smoked BBQ ribs! Exercise also helps bring your appetite back. Perseverance is the key- just keep trying stuff!

Hi jg99t9 @jg99t9,
I had 35 rounds (7weeks) of Photon radiation for a total of 70Gy and 3 rounds of cisplatin chemo for tonsil cancer back in 2008 but no surgery and to help with the brutal dry mouth tried ELECTRICAL STIMULATION ACUPUNCTURE in 2015 which was offered at my cancer clinic for head & neck cancer patients. I was tested to get a baseline and retested after 8-10 appts. and had great results. Never needed to go back and to this day 10 yrs. later dry mouth is a non-issue and I don't have to carry a water bottle with me either. I also slept with a bottle of water next to me and got a Humidifier on my end table to make sure there was the most moisture possible in my bedroom to help get some sleep.

I got this from my other cancer group SPOHNC and it mention AQUAx2 which is a clinical research study for people with moderate/ severe dry mouth (xerostomia) caused by radiation therapy purpose is to assess the efficacy and safety of "gene transfer" study drug called AAV2-hAQP1.

In addition, I didn't have this available to me but others on this support group site have mentioned “Xylimelts Stick-On Melts” you can buy off Amazon and the box of 40 was less that 10 bucks. People say they really work, and they sleep through the night. And their daytime dryness is much better also. You should research using for extended period of time effects. Also, Biotene spray is effective long time after 2 or 3 sprays! And more recently there is a Aquoral Protective Oral Spray- Dry Mouth Relief which is more than temporary relief of dry mouth. Or a prescription of Cevimeline.

Lastly, back in 2008 I did research then and found in an England Journal of Medicine that honey could help soothe the throat. I did shots of real honey not the ones you find in your local grocery store which most are all synthetic and don’t have the same benefits. It definitely took some of the edge off for me. I would use MANUKA honey (it's from New Zealand) which you can find on Amazon that scores at least UMF 15+ and MGO rating of 500+ are considered potent enough for medicinal use- UMF ranges from 10 to 25, the higher the rating, the more potent the benefits are, and of course, the more expensive, the honey. I use UMF 18+ and 700+ even now for many health benefits it offers and my most recent cancer treatments I received. In addition, I heard very good things about Red Light therapy, which uses infrared light from a wand in the throat has worked well for many.

Hope this helps and you will get better. Good luck on the journey.

Thanks Sandy,
Just wondering. How long before you took out your tube? Thanks for the advise.
Al

Thanks Lollie,
I feel like a baby. Seems like a lot of people have had their tube taken out between the 3 to 5 month period, and here I still have it at 7 plus. I guess I need to motivate myself more.
Thanks again for the advice,
Al

Thanks John,
I will try to introduce some more foods and I will try the Xylimelts. My ENT tells me that a lot of the time it takes a minimum of 1 year before you feel comfortable enough to eat substantially.
Thanks again,
Al

During my tongue cancer surgery in October '23 they removed several lymph nodes. One of those had thyroid cancer in it. So once I healed from the tongue cancer and radiation and chemo I went back to Rochester and had my thyroid removed in May. I kept my tube through that because I thought the second surgery might cause my throat to swell and challenge my swallowing again. I was right, it did. Once that calmed down and my eating picked up I had it out in August of '24. So I kept it 7 months past my first surgery and 3 months past the second.

I was in the same boat and one day I just made my mind up that I was going to start eating.
Oatmeal was my only food 3 X day for several months along with protein shakes and Greek yogurt.
Once I was ingesting food for a few weeks I requested to have my feeding tube removed and while they did that the gastrointestinal doctor did a Esophageal dilation and that seemed to help.
After several months I began eating meat and potatoes but I had to have allot of gravy over everything!
None of the meds or xylimelts worked for my dry mouth. I found that the best thing was; hot water mouth and throat rinse first thing in morning and throughout the day followed by brushing my teeth with toothpaste followed by a brushing with prescription fluoride paste and Sensodyne paste.
I need an enormous amount of liquid with my meals and still have difficulty swallowing food and I’m 8 1/2 years post treatments.
Hang in there and fight the good fight!

MOJO

jg, I agree with your ENT I'm approaching one year post and only recently have things gotten noticeably better. A word about the mucus build up. For me, this was one of the worst side effects of all of them. I was losing my mind with this and the constant feeling of hacking and fear of choking. Doctors prescribed many meds and nothing worked. But eventually it did indeed clear up and now is a distant memory.

A final tip regarding getting off the tube. I had been using Kate Farms formula for my entire time on the tube. When it was removed I ordered the shake version of the Kate Farms. Similar to the tube version only much better tasting. I ordered it by the case and would drink it to supplement my limited regular eating. I did this for four months post tube before I finally cut way back and could introduce a few other foods. Oh and once again I feel MUCH better now! Time heals all...well most 🙂 Hang in there