on a serious note tongue is still easily split and is very sesitive

RayTodd
RayTodd Member Posts: 187
in Head and Neck Cancer #1
Had tongue op 08June 11 finished Radiation 27Oct 11 (wow that's not so long ago)Ok am puzzled am still on pain med more so for side effects of rad so I can sleep , But side if tongue and gums ( had wisdom teeth removed ) are still sensitive and easily hurt E.G. brushing teeth, and the throat opening is weird I can eat what I want but halfway through a meal it gets sore. No saliva Grrr. but taste buds are improving out of site (still scared to start chilli regime (needed for Bali hehe). Otherwise all the professionals cannot believe what I am eating,and what I am doing physically. Although if I do not overeat I start loosing weight.


COMMENTS WELCOME

Yours in crime the Irish Dingo begorah Maite

Comments

  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #2
    I was on fentanyl for over a
    I was on fentanyl for over a year. I am now over 2.5 years out, and my tongue still hurts. Honestly, it hurts enough every day, that some one else, would probably still be on pain meds. (between my mouth, ears and neck, I would like to still be on pain meds. :-/ ). Brushing my teeth burns like heck. Most of the time, I numb my mouth before I brush. My tongue hurts when I eat, and since it takes me at least an hour to eat a meal, by the end, my mouth is getting sore and tired. (I don't do well numbing my mouth while trying to eat, makes my bite my tongue and lips, and I choke and gag.) I watch what I eat. There are foods I just do not eat, because I know they will irritate my tongue, give me bumps, or mouth sores. What are you eating? If you are eating things high in acid or hot (spicy) foods, you can give yourself mouth and tongue sores. There is no way I would eat chilis. Things like, pineapple, papaya, kiwi, citrus fruits, tomatoes, fruit juices, vinegar, salt, cayenne, ginger, and many other things can really bother your mouth after treatment. Some people can eat anything they want eventually, and some can't. I've been able to do some citrus, depending what I eat with it, some ginger and some fruit juice. The rest remain a problem.

    I also had to eat almost double the calories I normal would eat, just to maintain weight, then I finally started to gain. Now, I need to watch again.
  • Pam M
    Pam M Member Posts: 2,196
    #3
    Irish Dingo - Love It
    Yep, your body is probably burning calories in overdrive for the healing process. Here's hoping that later, you need to make a conscious effort to eat less. I can't recall how long my mouth, tongue and gums were sensitive after treatment, but (of course) it seemed like a very long time at the time. glad taste buts are recovering nicely, and you can eat well (considering).
  • RayTodd
    RayTodd Member Posts: 187
    #4
    sweetblood22 said:

    I was on fentanyl for over a
    I was on fentanyl for over a year. I am now over 2.5 years out, and my tongue still hurts. Honestly, it hurts enough every day, that some one else, would probably still be on pain meds. (between my mouth, ears and neck, I would like to still be on pain meds. :-/ ). Brushing my teeth burns like heck. Most of the time, I numb my mouth before I brush. My tongue hurts when I eat, and since it takes me at least an hour to eat a meal, by the end, my mouth is getting sore and tired. (I don't do well numbing my mouth while trying to eat, makes my bite my tongue and lips, and I choke and gag.) I watch what I eat. There are foods I just do not eat, because I know they will irritate my tongue, give me bumps, or mouth sores. What are you eating? If you are eating things high in acid or hot (spicy) foods, you can give yourself mouth and tongue sores. There is no way I would eat chilis. Things like, pineapple, papaya, kiwi, citrus fruits, tomatoes, fruit juices, vinegar, salt, cayenne, ginger, and many other things can really bother your mouth after treatment. Some people can eat anything they want eventually, and some can't. I've been able to do some citrus, depending what I eat with it, some ginger and some fruit juice. The rest remain a problem.

    I also had to eat almost double the calories I normal would eat, just to maintain weight, then I finally started to gain. Now, I need to watch again.

    sorry you two
    Now I feel like a wingeing wimp. Really but at least I can keep most of it from the other half hehehe no need all of us suffering. Thanks for putting it in perspective. I keep telling people the main bonus is it beats Jenny Craige
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    DingoRay
    Hi Ray....

    Hang in there bud, I think you'll probably start seeing more improvemtns soon..(hopefully).

    Best,
    John
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #6
    Irish Dingo ...
    Irish Dingo - I like the sound of that... Kind of like combining the best of both worlds.

    I'm with Sweet here. I never had pain serious enough to require pain meds, but roughly 20 months out and my tongue is still sore. Eating foods that are hard to chew can make my tongue uncomfortable for days.

    I can't handle pepper at all, but hot salsas and chiles are delicious. Go figure.

    Deb (who's having Chili for dinner tonight)
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #7
    RayTodd said:

    sorry you two
    Now I feel like a wingeing wimp. Really but at least I can keep most of it from the other half hehehe no need all of us suffering. Thanks for putting it in perspective. I keep telling people the main bonus is it beats Jenny Craige

    No, I'm sorry.
    I sure wasn't trying to make you feel that way. I was just trying to let you know all that, because it can take a long while to heal, (a very long time in my case) but that eating those things, can impede healing, and cause issues.

    Don't know what, if anything you have read in the HNC Superthread, but for tongue and mouth healing, you may want to try L-Glutamine. It's a powder, and you take one heaping teaspoon, and mix it in a cup of water, and swish and swallow. It's also good for helping your body for exercise, and when you are trying to gain muscle back.

    Here is some info on glutamine:


    GLUTAMINE


    ARTICLE ON BENEFITS OF GLUTAMINE


    GLUTAMINE

    ARTICLE ABOUT GLUTAMINE AND THE PREVENTION OF MUCOUSITIS IN BMT PATIENTS
  • RayTodd
    RayTodd Member Posts: 187
    #8
    sweetblood22 said:

    No, I'm sorry.
    I sure wasn't trying to make you feel that way. I was just trying to let you know all that, because it can take a long while to heal, (a very long time in my case) but that eating those things, can impede healing, and cause issues.

    Don't know what, if anything you have read in the HNC Superthread, but for tongue and mouth healing, you may want to try L-Glutamine. It's a powder, and you take one heaping teaspoon, and mix it in a cup of water, and swish and swallow. It's also good for helping your body for exercise, and when you are trying to gain muscle back.

    Here is some info on glutamine:


    GLUTAMINE


    ARTICLE ON BENEFITS OF GLUTAMINE


    GLUTAMINE

    ARTICLE ABOUT GLUTAMINE AND THE PREVENTION OF MUCOUSITIS IN BMT PATIENTS

    hey Sweets never
    worry about me taking things wrong I am strong enough to know and accept my weakness's Actually you made me think as I found anecdotally the glutamine helped heaps during rad treatment never thought to keep using it thanks.
    PS Non of my bro's and sisters on here could ever upset me.LOve Ray
  • RayTodd
    RayTodd Member Posts: 187
    #9
    Skiffin16 said:

    DingoRay
    Hi Ray....

    Hang in there bud, I think you'll probably start seeing more improvemtns soon..(hopefully).

    Best,
    John

    Oh Mait
    I am so improved forgot how I have just finished Rad 2.5 months ago. Have met my wall though and was sorely shocked I did 35KM (21.75 Mls for you unedjmacated)on my bike on Sat with lots of hills and found it almost impossible to turn the pedals for the last 5KM.. I almost got off boo hoo never experienced that in my life nothing in the tank.Still I am going out today for a 20 KM hopeing to get to 60 KM (37.28 Mls) by March

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