Lifetime feeding tube

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58HarleySportsterman
58HarleySportsterman Member Posts: 13
in Head and Neck Cancer #1

Has anyone else with neck and throat cancer been given a lifetime sentence of having to take their nutrition and hydration solely by a feeding tube and machine or bolus? If so, why? That is if I may ask. Mine was the result of a swallow test I underwent about 2-months ago which showed that I am aspirating every time I swallow food or water, and it doesn;t matter how much or how little. I've been on my feeding machine now for two years, which began to be only a temporary thing that I was supposed to be able to eventually get off of. How long have you had a feeding tube, and has it been pretty much non problematic for you, other than having to have the tubes replaced about every 6-8 monthes like I've had to? Any advice is always welcomed.

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  • MickeyD
    MickeyD Member Posts: 14
    #2
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    Swallowing therapy may help

    While hospitalized in July '18 for an unrelated problem, a swallowing test showed I was aspirating.  Ended up with a PEG tube which I replaced with a Mic-Key button.  I started swallowing therapy as an outpatient and it has done some good.  I have a number of sessions with the therapist and then they test again.  We have done this a number of times. My situation has improved but I still take my nurishment and meds through the tube. Am hoping I will be able to end dependence on the tube by this July.  I have started to drink some liquids by mouth after I thicken them with a thickening agent.  I am also starting to swallow some foods like apple sause while in therapy. I know I will have problems swallowing some foods, which I understand is pretty common.  I've been given some exercises to help with this.  My cancer was in my parotid and jaw and not in my throat so I have no experience with what you have gone through but one of my neighbors did and he worked with the same therapist I have and he is now able to eat by mouth, so you have hope.  Suggest you check with your oncolgist or ENT and see if he will refer you to a swallowing therapist and what he thinks about this.  Good luck.  Hope you are eventually able to eat and drink normally.

  • SASH
    SASH Member Posts: 421 Member
    #3
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    Heading in that direction

    I opted not to have a feeding tube during my radiation and chemo, but did have to have it for when I had my surgery 19 years ago.  A few years back they found I was having silent aspirations when drinking and eating.  With some exercises and evaluations with a swallowing specialist this slightly improved, at least to the point where I'm not always aspirating.

    But things are getting harder again to swallow. They have me on thickened liquids for hydration.  And my normal meals are either soft foods or protien shakes.  These either get thicked with my thickening powder or peanut butter. 

    They just found last week that I am now having some more dental issues which will probably require 3 of my remaining 11 upper teeth to be removed.  Once this happens I will probably be on liquids only as those teeth are on the side that I currently chew.  But I figure at some point I will be given a tube.  I'm ok with that now, as it is going to be the only way I can get the nutrition and calories in without it ending up in my lungs.

  • Suez39
    Suez39 Member Posts: 162 Member
    #4
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    Feeding tube dependent

    I got diagnosed with cancer on the base of my tongue and left tonsil. I had a very large tumor that I had chemo and radiation treatments for. They put me on a feeding tube and told me that it was only temporary untIL my throat healed and I could eat. Ive been on the tube for 1 year with no problems with it so far. I have a lot of built up scar tissue on my tongue and epiglotis that's preventing me from getting any food down. I agree with Mickey. I do swallowing excersizes on a daily basis. But it doesn't seem to help me cause of my scar tissue. You might want to ask your ENT or therapist what's preventing you from swallowing food. I know how you feel and sympathize with you. Being on a tube for a long time is very depressing and prevents you from doing a lot of things. I truly hope you get better. Please stay in touch on this forum. I have made a lot of valuable friends and learned a lot that my medical team didn't tell me. Hugs to you!

  • dnelson964
    dnelson964 Member Posts: 21 Member
    edited June 2019 #5
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    You can get off

    Try getting nutrition down with blender drinks. Mix 8oz. protein drink with eggs, scoup protein powder, banana pieces, kale, blue berries, strawberries, 4 apricote seeds. It will pour down your throat easily. I had some swollowing troubles and this is how I avoided a feeding tube. I am still 3 yrs cancer free and eating better now but still use the blender way daily.

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