Peg tube post radiation

mbr1963
mbr1963 Member Posts: 5 Member
edited February 12 in Head and Neck Cancer #1

My husband completed radiation in April 2023 for SCC stage 3 of the mouth. He is still using a feeding tube. 10 months later) He will not eat anything because of texture, dryness and taste. Anyone else have a feeding tube this long?

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,273 Member

    Hello, mbr1963 and welcome to the CSN H&N discussion forum.

    Sorry to hear your husband is having trouble eating. Many of us on here have gone through the difficulties of eating again when it was after treatment and the swelling of things in the area of the throat, mouth, etc. went down where things would start working again. I know I and many many others on here have dealt with exactly what your husband is going through, texture of food, dryness because of reduced saliva, and taste either nonexistent or diminished.

    The situation he is in many of us have faced and you can triumph over this challenge. This is all part of recovery, he has to push himself a bit, when food has poor taste, seems dry, and the texture is not right you need to do little bits at a time to get things working again, to get past the times like no taste and eventually many of the areas affected come back, and it may not be 100% but they come back and we call this our "New Normal". All these things he is experiencing is because of his treatment and much of it will come back but in the meantime he should be working on eating and swallowing and be anxious to get things working again. After all he didn't get treated to come through and have issues he got treated to live and thrive.

    I am in the same boat as he is with all three things he is struggling with, the texture of food, I would say the texture of food is my least bothersome as that change has come back quite a bit since treatment. Dryness, less saliva due to damaged salivary glands during radiation, I have I would say 30-40 percent saliva back since treatment and when eating especially bread or less than moist foods I need to sip a tiny bit of liquid with each mouthful to make up for diminished saliva and I prefer soda since it seems to alter the taste of the food less. Water seems to lower taste too much. Taste, my taste is also diminished but I have enough to still get enough flavor out of food to be satisfactory.

    If your husband is waiting for everything to reset back to normal pre-treatment status I doubt that will happen, he has to start eating and chewing small bits of food and I think it will help get things going again and provide stimulation. Work at it a little at a time. This recovery from head and neck cancer is a slow process and is measured in weeks and months not days and weeks such as a cold or flu. It is a slow process but he can do this and come out on top with his new normal whatever it is but like many of us he has to just get going with whatever he's got and live on.

    As far as the length of time having a feeding tube some have had one a year or more and sometimes longer because of extenuating circumstances of their case but the goal is to get eating again and get it removed.

    Does your husband have a speech therapist assigned to him, I did and many on here had one also. They help you with all things H&N such as eating, breathing, speech, saliva, and many other issues involved in H&N treatment and recovery. They may even have him get a swallowing test which would probably be helpful. If he doesn't have on check with his doctor and they can refer him to one and I bet they can get him back on the path again and help him with any challenges he faces with eating. I will post a couple of video links below about speech therapists.

    I would also recommend you check out the Superthread at the top of the page there is loads of information in there with links and you will find it helpful.

    Our Motto On Here is NEGU (Never Ever Give Up)

    I hope this helps.

    Wishing You The Best

    Take Care, God Bless

    Russ


    Swallowing and Speech Rehabilitation for Head and Neck Cancer


    What happens during a swallow test?


  • mbr1963
    mbr1963 Member Posts: 5 Member

    Russ, thank you. Swallow study was today. We do have a speech therapist. I will share your feedback with him. Bless you on this journey. Wishing you all the best. Mary Beth

  • wbcgaruss
    wbcgaruss Member Posts: 2,273 Member

    Very well, Mary Beth, I hope things get worked out for your husband, so he starts feeling better. A positive can do attitude is a big plus.

    Take Care, God Bless

    Russ

  • Logan51
    Logan51 Member Posts: 464 Member

    Had a FT for the last 4 years and 5+ months without an issue. Not a mickey tube, or balloon. Long tubing with a Y-port at the top, I pour my liquid grub down a 60ml syringe and shoot my dissolved medicine into the smaller opening in the Y.

    No hope for me to swallow again, and hope your Hubby can get back to eating the traditional way. Not that I would ever be jealous, but I've been known to say, "A jelly-filled long john with frosting. My kingdom for the ability to eat a jelly-filled long john with frosting."☺️

  • mbr1963
    mbr1963 Member Posts: 5 Member

    Oh I’m sorry to hear this. Long John, haha, that’s what we called them in Chicago!!! Thx for your input. Bless you

  • passout
    passout Member Posts: 4 *

    I was not offered information regarding long term effects of radiation treatment. 10 years post treatment I am experiencing neck spasms. Gerd, esophagitis, difficulty swallowing, thick mucus and syncopy. I have done some research and feel some of it is due to a damaged vagus nerve.

  • mbr1963
    mbr1963 Member Posts: 5 Member

    If they told us the real side effects, no one would sign up. I’m sorry to hear about all these issues you’re having. Bless you.

  • wbcgaruss
    wbcgaruss Member Posts: 2,273 Member

    Hello, passout, and welcome to the CSN H&N discussion forum.

    Previous to getting treatment they do tell us about side effects we will experience during treatment but not really the long-term possibilities.

    I think they are not looking too far into the future at this point, the main thing is to get rid of the cancer and save your life. I have always figured if they explained the possible side effects way ahead in the future I think most folks would say they can handle it I just want a plan made and get rid of this cancer and I will worry about the rest later. I don't think any would say oh my the side effects that I might get sound awful I think I will just keep the cancer and skip treatment and just see how long I live.

    passout I would also recommend you check out the Superthread at the top of the page there are loads of information in there with links and you will find it helpful.

    Wishing You The Best

    Take Care, God Bless

    Russ

    Our Motto On Here is NEGU (Never Ever Give Up)


  • francma
    francma Member Posts: 69 Member

    Hi! 13 yrs ago I had a feeding tube during my treatments and was kept for at least a year until I could eat and keep my weight stable. I would encourage him to eat whatever he can, little at a time. Definitely needs a SLP who helps with the swallowing. Many exercises. Important to use the throat muscles before they weaken up.

  • wbcgaruss
    wbcgaruss Member Posts: 2,273 Member

    I second what francma said, if someone is not swallowing and is now on a feeding tube, in the interim, they should be actively doing swallowing exercises and working with a speech therapist to be sure they are doing all the exercises as per their situation. If you don't swallow for a long time I am told you will forget how to swallow and will have to relearn it again, and who wants to do that? I had to question the medical folks when they told me that. I said really I will forget how to swallow and yes it is true.

    Use it or lose it: Eating and swallowing exercises show benefit in throat cancer patients

    Take Care, God Bless

    Russ

  • mbr1963
    mbr1963 Member Posts: 5 Member

    Thank you. Couldn’t agree more.