Base of tongue Cancer

edcsdc
edcsdc Member Posts: 3
edited March 2014 in Head and Neck Cancer #1
Hi I was found to have base of tongue cancer last December 2002 and in neck glands had 37 Radiation and 5 cemo treatements last on Feb 5th 2003 have peg tube tube fitted as in end could not eat or drink was very hard have been told Tumer gone am still going to hospitat each month getting MRI in one week 22nd July I still can not eat any food with any lumps no matter how small was looking for any help from any one who might have had same problem and how they got around this can not eat bread meat choc only soft diet can any one help
Thanks

Comments

  • MWHF
    MWHF Member Posts: 10
    #2
    My last radiation tratment was April 30, 2002. My mouth was very sore. Luckily I had a peg tube to pour in Boost. As time went on, I would gag on bread, meat, etc. As long as I would drink something as I ate, it went down. Now, I can eat ribs, sandwiches, french fries. It doesn"t taste quite as good as before, but I lost 70 pounds, look a hell of alot better and if I have to live with a slightly dry mouth, at least it appears I am cancer free.
  • Steveolek
    Steveolek Member Posts: 1
    #3
    edcsdc
    Seems we went thru about the same treatment for oral cancer, although mine was Stage IV when discovered. 12+hours in radical neck dissection surgery followed by 7 weeks radiation, and I have a peg tube. Have not eaten in 6 years. So what? I am alive and can do better than 10-15miles a day on my mountain bike, and just got married last month. I am 61 years old. Mine may be from Agent Orange in Vietnam...was USAF pilot there on 2 tours. I still pour in a few Coronas now. Smoked when younger. Here are some ideas for food for peg tube. Get powdered Slim-fast and mix with Skim milk, but add tablespoon of olive oil, you need fat and oils. Once a day I take a can of condensed cream of --- soup (usually chicken)and put in blender with water AND half a can of milk. This is for fats you need or your fingertips begin to split and bleed. I have a little dry mouth, too. Again---so what? Look at what you have, not what you don't have. I can tell you more if we chat together. Love to help and would love to eat again myself. But, I sure like living. Good luck and Godspeed. Steve
  • slacker99
    slacker99 Member Posts: 2
    #4
    Steveolek said:

    edcsdc
    Seems we went thru about the same treatment for oral cancer, although mine was Stage IV when discovered. 12+hours in radical neck dissection surgery followed by 7 weeks radiation, and I have a peg tube. Have not eaten in 6 years. So what? I am alive and can do better than 10-15miles a day on my mountain bike, and just got married last month. I am 61 years old. Mine may be from Agent Orange in Vietnam...was USAF pilot there on 2 tours. I still pour in a few Coronas now. Smoked when younger. Here are some ideas for food for peg tube. Get powdered Slim-fast and mix with Skim milk, but add tablespoon of olive oil, you need fat and oils. Once a day I take a can of condensed cream of --- soup (usually chicken)and put in blender with water AND half a can of milk. This is for fats you need or your fingertips begin to split and bleed. I have a little dry mouth, too. Again---so what? Look at what you have, not what you don't have. I can tell you more if we chat together. Love to help and would love to eat again myself. But, I sure like living. Good luck and Godspeed. Steve

    Hi I am an oral cancer survivor. I had a tumor on my tongue and had it removed a few months ago. I have also had radiation, but I had radiation implants, not external radiation. I am only 21 years old and I was formerly a smoker for about 5 years. I can eat, but I have no taste buds. Would like to chat with ya'll. Slacker99
  • leecat
    leecat Member Posts: 31
    #5
    slacker99 said:

    Hi I am an oral cancer survivor. I had a tumor on my tongue and had it removed a few months ago. I have also had radiation, but I had radiation implants, not external radiation. I am only 21 years old and I was formerly a smoker for about 5 years. I can eat, but I have no taste buds. Would like to chat with ya'll. Slacker99

    Hi I am a 13 year survivor of oral cancer never smoked and still I eat a soft diet. There is hope
    at the end of a long tunnel. I had both radiation and chemo. The radiation has left it's mark on me
    in that I have chronic neck pain due to nerve endings. But still would like to chat with all of you. The soft diet is not to bad. Hope to hear from
    some one soon.
    Cathy
  • toms
    toms Member Posts: 2
    #6
    Steveolek said:

    edcsdc
    Seems we went thru about the same treatment for oral cancer, although mine was Stage IV when discovered. 12+hours in radical neck dissection surgery followed by 7 weeks radiation, and I have a peg tube. Have not eaten in 6 years. So what? I am alive and can do better than 10-15miles a day on my mountain bike, and just got married last month. I am 61 years old. Mine may be from Agent Orange in Vietnam...was USAF pilot there on 2 tours. I still pour in a few Coronas now. Smoked when younger. Here are some ideas for food for peg tube. Get powdered Slim-fast and mix with Skim milk, but add tablespoon of olive oil, you need fat and oils. Once a day I take a can of condensed cream of --- soup (usually chicken)and put in blender with water AND half a can of milk. This is for fats you need or your fingertips begin to split and bleed. I have a little dry mouth, too. Again---so what? Look at what you have, not what you don't have. I can tell you more if we chat together. Love to help and would love to eat again myself. But, I sure like living. Good luck and Godspeed. Steve

    are you still posting...I was just diagnosed and your message encouraged me. thanks
  • Reggie13
    Reggie13 Member Posts: 9
    #7
    Base of Tongue

    How are you doing now edcsdc?

  • Reggie13
    Reggie13 Member Posts: 9
    #8
    leecat said:

    Hi I am a 13 year survivor of oral cancer never smoked and still I eat a soft diet. There is hope
    at the end of a long tunnel. I had both radiation and chemo. The radiation has left it's mark on me
    in that I have chronic neck pain due to nerve endings. But still would like to chat with all of you. The soft diet is not to bad. Hope to hear from
    some one soon.
    Cathy

    Base of Tongue Cancer

    Hi there Cathy, I too am a survivor (2003), now suffering from severe side effets from all that radiation 12 yrs ago.  I would love to chat with you.  I hope you're doing okay.  Get back if possible. 

  • Lee alex
    Lee alex Member Posts: 1
    #9
    leecat said:

    Hi I am a 13 year survivor of oral cancer never smoked and still I eat a soft diet. There is hope
    at the end of a long tunnel. I had both radiation and chemo. The radiation has left it's mark on me
    in that I have chronic neck pain due to nerve endings. But still would like to chat with all of you. The soft diet is not to bad. Hope to hear from
    some one soon.
    Cathy

    Base of tongue cancer

    I had base of the tongue cancer stag IV and had radiation and chemo (cisplatin) in 2013. Had a tube, spit into tissues for awhile, started with soups and pudding and ensure. Have moved up to sandwiches with no crust, use a yogurt to go with it for liquid.

    all going well except the radiated lower jaw is holding in  7 abscesses that need extraction. I'm to use hyperbaric oxygen treatment prior to extraction and more HBOT after.

    just a warning for people with a radiated jaw in the way of a targeted imrt. Radiation can have later effects on your jawbone. It gets that way due to dry mouth and no saliva to combat bacteria,

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #10
    Reggie13 said:

    Base of Tongue

    How are you doing now edcsdc?

    Old One

    Reggie,

     

    This post goes back to 2003 so don't expect a response.  It never hurts to resurrect and old post 'cause any info is good info.  I too had BOT cancer so that prompted me to click on it.  Mine was not SCC, but MEC.  A totally different cancer.  Mucoepidermoid Carcinoma currently in remission.  And it better stay that way!

     

    Tom

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