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

I had tongue cancer and surgery, radiation and chemo ending in Feb. '24. I kept my tube until I was comfortable with my food intake and pain free. I found that my post surgical pain kind of came and went a few times for various reasons. Same with saliva. Some days its good, others no so. So I kept my tube until I was comfortable. I was in no rush. I also used it for hydration. If I was constipated or my urine appeared strong I would add more water through the tube. Other than pain I found my tongue and throat sometimes felt swollen for whatever reason making swallowing a challenge and caused choking. On those days the tube was a God send. My advice is don't be in a hurry to get rid of it unless its uncomfortable or hard to manage. Let your body heal at its own pace and use your tube to keep your nutrition up so the healing stays on track.

To improve my saliva I used Xylimelts. They are a mint that stick to your gum as you sleep. I got mine from Amazon but Wal-Mart also has them. They really work. Kept my mouth moist so I could sleep thru the night.

Hello @jg99t9 Seven months post seems excessive but each case is different. And you are correct in that many foods now are difficult to eat primarily due to lack of saliva. As for myself I started a list of what I can and cannot eat and built up from there. I ate a lot of low sugar custard pie for example. No bread unless nibbled with a lot of butter. No rice, white meat chicken, celery, etc.
There have been many discussions in the head and neck group about dry mouth. The search box above can take you to several.
The pain of swallowing can take a few years to go away completely but does seem to get milder over time. About fifty muscles are involved with a simple swallow and many of them have likely been radiated. Not to mention the nerve damage which likely you are aware of in the neck, shoulders and arms. But when you can eat enough to sustain weight and nutrients without a feeding tube, out it comes.
I know this isn’t what you thought you would be thinking about in life at this stage but tough times never last, only tough people do.

Hi @jg99t9 As William said, each case is different. For me, I was apprehensive about removing the feeding tube concerned that I would not be able to get enough calories by mouth but at my doctors recomendation I had it removed at four months post treatment. At that time the pain was slightly better but by no means gone and I still had severe dry mouth. What I did was to find something that I could swallow, in my case vegetable filled dumplings in a mild chicken broth. I'd buy bags of these things at the supermarket and literally lived on them for months until I gradually could introduce different foods into the mix. I still have one bag left but refuse to eat it or get rid of it as it reminds me of what I went through. Weird I know.

Today, one year out I can eat most foods not all but have to wash down each bite with water and my water bottle is with me 24/7. But I feel that's a small price to pay all things considered. As others have mentioned I use Xylimelts nightly. They really work and I found many similar products did not. Just one in my mouth at bedtime has helped tremendously with dry mouth at night. Water bottle every waking hour and Xylimelts when sleeping. That's been my routine.

Stay strong. Seems like it takes forever I know but it will get better and there is quality life after your journey is over. All the best.

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!

I forgot to add....hot, not iced tea and coffee. I'm a decaf person but either one, hot really helps my swallowing. Better than cold water or milk. Also I learned to make tapioca pudding in the crock pot. Found recipes on Pinterest. Some folks make instant pudding using protein shakes instead of milk. A good way to get your protein in and calories.

I also stimulated my salivary gland (I lost the right side but still have left) with lemon or dill pickle. I touch the lemon or pickle to my original tongue and it causes me to salivate. I did that a few time everyday just to keep things flowing early on. Worked for me.

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 for the advice. I will look into getting the Xylimelts.

Thanks, William. I guess everyone is different. I suppose I still have it for insurance. Sometimes I feel a little better and then the next day I feel worse. It's also tough with all the constant mucus build up that I can't seem to get rid of. I'm gonna pick a day and try to not use my feeding tube and hopefully my appetite will force me to eat more. If that works than I will gradually keep it up.
Thanks again,
Al

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