Need Swallowing Advice

seahorse402
seahorse402 Member Posts: 6
in Head and Neck Cancer #1
Hi my name is Joan and I have been treated for cancer at the base of my tongue. I had 35 radiation treatments and 3 cisplatin chemo treatments. The treatments finished on Sept. 26 and a week later I got so run down that I wound up in the hospital where I suffered a minor stroke and got out of the hospital 15 days later. Luckily because I was given TPA in time, I have no after effects from the stroke. I am getting really discouraged by the fact that I still am dependent on the feeding tube and can't swallow to drink or eat real food. Does anyone have some helpful hints to get past this?

Comments

  • CajunEagle
    CajunEagle Member Posts: 408
    #2
    Advice
    My half-a-million dollar team had a great Speech Pathologist. She not only worked for a few months to get me to talk, but also spent many an hour working with me on getting my epiglottis to shrink enough so food would enter my esophagus. Every other week, I was put through the torture of that dang Barrium test, which was highly motivational to carry out the prescribed excersises in order to swallow. I was dependent on the tube for 11 months, until I made up my mind that I was not going to use it anymore. When I could document that I could go a month eating orally, and not losing weight, then....and only then....the tube could be yanked. It worked. Find yourself a good Speech Path professional.

    Larry
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
    Hi Joan. Have you had a
    Hi Joan. Have you had a swallowing study yet? That could show what the difficulty is and maybe if a dilation is needed or if you can work with a speech pathologist and so swallowing exercises to help. I was on a peg tube for 18 months and had to be stretched two times. I still have a stricture though, and I eat very slowly. I've learned to prepare my food differently (I mince a lot of my food in a chopper) and to cook it so that I can swallow it. I eat a lot of vegetables and grains, drink a lot of my calories, make a lot of soups, and I cannot really eat much meat, but I'm eating good food now and have no tube.
  • seahorse402
    seahorse402 Member Posts: 6
    #4
    CajunEagle said:

    Advice
    My half-a-million dollar team had a great Speech Pathologist. She not only worked for a few months to get me to talk, but also spent many an hour working with me on getting my epiglottis to shrink enough so food would enter my esophagus. Every other week, I was put through the torture of that dang Barrium test, which was highly motivational to carry out the prescribed excersises in order to swallow. I was dependent on the tube for 11 months, until I made up my mind that I was not going to use it anymore. When I could document that I could go a month eating orally, and not losing weight, then....and only then....the tube could be yanked. It worked. Find yourself a good Speech Path professional.

    Larry

    Swallowing
    Thank you for responding to my question. You have just motivated me to force myself to do the exercises given to me and I am meeting with my swallow team leader tomorrow.
  • seahorse402
    seahorse402 Member Posts: 6
    #5
    sweetblood22 said:

    Hi Joan. Have you had a
    Hi Joan. Have you had a swallowing study yet? That could show what the difficulty is and maybe if a dilation is needed or if you can work with a speech pathologist and so swallowing exercises to help. I was on a peg tube for 18 months and had to be stretched two times. I still have a stricture though, and I eat very slowly. I've learned to prepare my food differently (I mince a lot of my food in a chopper) and to cook it so that I can swallow it. I eat a lot of vegetables and grains, drink a lot of my calories, make a lot of soups, and I cannot really eat much meat, but I'm eating good food now and have no tube.

    Swallowing
    Thank you so much responding to my question regarding swallowing and when I see my doctor at the end of this month will bring up the stretching with him.
  • seahorse402
    seahorse402 Member Posts: 6
    #6
    sweetblood22 said:

    Hi Joan. Have you had a
    Hi Joan. Have you had a swallowing study yet? That could show what the difficulty is and maybe if a dilation is needed or if you can work with a speech pathologist and so swallowing exercises to help. I was on a peg tube for 18 months and had to be stretched two times. I still have a stricture though, and I eat very slowly. I've learned to prepare my food differently (I mince a lot of my food in a chopper) and to cook it so that I can swallow it. I eat a lot of vegetables and grains, drink a lot of my calories, make a lot of soups, and I cannot really eat much meat, but I'm eating good food now and have no tube.

    Swallowing
    I forgot to mention that I did have a swallow study and am meeting with my team leader tomorrow.
  • jim and i
    jim and i Member Posts: 1,788 Member
    #7
    Don't worry
    My husband finished treatment for stage 4 BOT cancer mid August. Still can't eat but does drink water although not enough. Some get off the tube within a few months, others it takes up to a year or more. Do those exercises!!!! They do help.
    Don't give up, it will get better.

    Blessings,
    Debbie
  • hawk711
    hawk711 Member Posts: 566
    #8
    jim and i said:

    Don't worry
    My husband finished treatment for stage 4 BOT cancer mid August. Still can't eat but does drink water although not enough. Some get off the tube within a few months, others it takes up to a year or more. Do those exercises!!!! They do help.
    Don't give up, it will get better.

    Blessings,
    Debbie

    Hey Seahorse
    Sorry you are having problems swallowing. I too had issues for many months. I had my tube for 13 months and learned to eat from scratch. I started with yogurt, it took 45 minutes to eat first time.....then on to puddings, then soup, then some cottage cheese, then on to chicken cut up small, then on to steak, again really small. You get my drift. I started to eat soft stuff, then tried the harder stuff. if I couldn't get it down, I'd wait another month and try it again. This whole process is a year plus of trying so don't get discouraged. It will come but verrrrrry slowly....I am 20 months post treatment and last night I had chicken, rice, cottage cheese, salad and a cookie!!! Lots of liquid to wash it all down. I've found milk is the best rinse to get food down, better than water for sure.....Keep trying and don't get discouraged, the tube is your friend right now as it keeps your weight up and gets you all the protein you need,,,,be thankful for it. I hated it, but looking back it was a great choice for me. I lost 20 lbs and have kept it off and feel great now.....trying to eat more healthful stuff than I did before "C"....
    All the best to you, just keep patient and positive and you'll be o.k.
    Steve
  • seahorse402
    seahorse402 Member Posts: 6
    #9
    jim and i said:

    Don't worry
    My husband finished treatment for stage 4 BOT cancer mid August. Still can't eat but does drink water although not enough. Some get off the tube within a few months, others it takes up to a year or more. Do those exercises!!!! They do help.
    Don't give up, it will get better.

    Blessings,
    Debbie

    Swallowing
    Thanks for the encouragement. I just met with my swallow team leader and promised her I would be more faithful with my exercises (been kind of lazy about them). She also set me up for as swallow study and told me that thicker drinks, such loose smoothies, are sometimes easier to swallow than water as was goes down too fast for people who have these problems and swallow slowly. Check with your doctors on this for your husband. Good Luck
  • seahorse402
    seahorse402 Member Posts: 6
    #10
    hawk711 said:

    Hey Seahorse
    Sorry you are having problems swallowing. I too had issues for many months. I had my tube for 13 months and learned to eat from scratch. I started with yogurt, it took 45 minutes to eat first time.....then on to puddings, then soup, then some cottage cheese, then on to chicken cut up small, then on to steak, again really small. You get my drift. I started to eat soft stuff, then tried the harder stuff. if I couldn't get it down, I'd wait another month and try it again. This whole process is a year plus of trying so don't get discouraged. It will come but verrrrrry slowly....I am 20 months post treatment and last night I had chicken, rice, cottage cheese, salad and a cookie!!! Lots of liquid to wash it all down. I've found milk is the best rinse to get food down, better than water for sure.....Keep trying and don't get discouraged, the tube is your friend right now as it keeps your weight up and gets you all the protein you need,,,,be thankful for it. I hated it, but looking back it was a great choice for me. I lost 20 lbs and have kept it off and feel great now.....trying to eat more healthful stuff than I did before "C"....
    All the best to you, just keep patient and positive and you'll be o.k.
    Steve

    Swallowing
    Dear hawk711

    Thanks for the encouragement. Even though it is hard, I will try to be more patient and stop thinking negatively. Just met with my Swallow Team leader who said I will eat one day, it will happen. Keep doing exercises to strengthen my throat and tongue muscles.

    Joan
  • lilwriter
    lilwriter Member Posts: 13
    #11
    Why speech pathology - I can
    Why speech pathology - I can swallow water and take a pill in the morning but gets harder at night. It feels as if there are razor blades in my throat and nurse said she sees white lumps in there and tissue is healing. How long to heal? I

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