Tongue cancer recovery

GM
GM Member Posts: 8
in Head and Neck Cancer #1
I had cancer on my tongue and had it along with a lymph mode removed followed byn7 weeks of treatment. I have been done with my radiation and chemo treatments for three months now. The treatments took a toll and I have lost 49 lbs from a frame of 188 at the start. My problem is that I cannot get the pain in my mouth to go away. It is such that even at the three month mark post treatment I cannot eat anything past oatmeal and even that burns terribly and I have to take a tiopical deadening agent to make it happen. Because of the extreme pain in my mouth it is completely preventing me from moving forward in getting well because all I do,is feeding tube intake which is no way to live.. So frustrated at this point because the Dr. is in a holding pattern to wait and see and I think we have to look for alternatives. Has anyone had this issue and or done anything to successfullym get rid of the pain?

Comments

  • Ingrid K
    Ingrid K Member Posts: 813
    #2
    your are doing great in your recovery
    GM, you are doing great time-wise. You just need to give it more time. You have been thru the battle of your life and it will take your body time to heal. At only 3 months post-treatment you are right on schedule. Don't give up. I know it's frustrating. I was on the tube feeding for almost 12 months post-surgery and just kept trying to eat soft foods and supplementing that with the tube feedings. Make sure you use a protein powder supplement and get plenty of water. Try to swallow at least some water every day so you don't lose the swallowing muscles, but don't beat yourself up if you have to do the tube feedings. I'm sure the docs are telling you to be patient and give it more time. That's what mine said to me...now I am one year past my last radiation treatment and things are pretty good. I can eat lots of different foods, can swallow water and juice w/o problems, and got the tube removed about 3 weeks ago. Take the pain meds..you still need them at this point in your journey. Don't be a martyr...it's temporary. Wishing you well. I am sure others will chime in here shortly as well.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    Hey GM
    I understand your frustration. It would be nice if all of us blazed back to 100% status, and could go on about our lives as though nothing had ever happened. Unfortunately that isn't how it works for some of us. I'm a bit like you, 10 weeks out from treatment and very slow at oral healing. I've started some "solid" foods, but am unable yet to come even close to taking in enough to get by. But I've not ever had a tube.

    Are you able to get in liquids? I would imagine so, if you are able to do oatmeal or anything else by mouth. I have pretty much been on a liquid diet for 4 months now, but ensure has been enough calories (I have been doing six a day) that I haven't lost weight. If you can take liquids in, you are able to take in enough calories that you will eventually be free of the tube.

    For some of us, healing the oral ulcers just takes lots and lots of time. Eventually they do heal, and when they do your pain will go away. That still may take you a few more months to do. I find I'm still using the magic mouthwash 4 times a day, and the half hour after I do is the most comfortable time of my day. sometimes I wish I could use it more, but of course, if it is overused it doesn't work as well.

    Make sure as well that you don't have thrush. Thrush can be an ulcerative process, and that hurts like hell.

    WIshing you a speedy recovery!

    Pat
  • GM
    GM Member Posts: 8
    #4
    longtermsurvivor said:

    Hey GM
    I understand your frustration. It would be nice if all of us blazed back to 100% status, and could go on about our lives as though nothing had ever happened. Unfortunately that isn't how it works for some of us. I'm a bit like you, 10 weeks out from treatment and very slow at oral healing. I've started some "solid" foods, but am unable yet to come even close to taking in enough to get by. But I've not ever had a tube.

    Are you able to get in liquids? I would imagine so, if you are able to do oatmeal or anything else by mouth. I have pretty much been on a liquid diet for 4 months now, but ensure has been enough calories (I have been doing six a day) that I haven't lost weight. If you can take liquids in, you are able to take in enough calories that you will eventually be free of the tube.

    For some of us, healing the oral ulcers just takes lots and lots of time. Eventually they do heal, and when they do your pain will go away. That still may take you a few more months to do. I find I'm still using the magic mouthwash 4 times a day, and the half hour after I do is the most comfortable time of my day. sometimes I wish I could use it more, but of course, if it is overused it doesn't work as well.

    Make sure as well that you don't have thrush. Thrush can be an ulcerative process, and that hurts like hell.

    WIshing you a speedy recovery!

    Pat

    Thanks for,the words of wisdom
    It may be that the magic mouthwash is part of the problem in that I improbably use it too much but without it, the pain is virtually unbearable. I am eating oatmeal a couple times a day but have to,power it down right after the deadening mouthwash to,avoid the extreme burn. If anyone has alternative mouthwash or other medical actions I should take I am wide open.. I am trying to be patient but the slow pace is so incredibly frustrating when you cannot see progress that I have to wonder if I am missing an option that might speed things up..

    Also, does anyone have a recommendation on a website that offers recipe options for blender or food processor savory meals that might taste gooe, be high in caloric content .. Something like a warm cheeseburger slurry has me thinking it might be worth a try..


    Thanks to all for you help..it is very nice of you to,take the time...

    GM
  • jtl
    jtl Member Posts: 456
    #5
    GM said:

    Thanks for,the words of wisdom
    It may be that the magic mouthwash is part of the problem in that I improbably use it too much but without it, the pain is virtually unbearable. I am eating oatmeal a couple times a day but have to,power it down right after the deadening mouthwash to,avoid the extreme burn. If anyone has alternative mouthwash or other medical actions I should take I am wide open.. I am trying to be patient but the slow pace is so incredibly frustrating when you cannot see progress that I have to wonder if I am missing an option that might speed things up..

    Also, does anyone have a recommendation on a website that offers recipe options for blender or food processor savory meals that might taste gooe, be high in caloric content .. Something like a warm cheeseburger slurry has me thinking it might be worth a try..


    Thanks to all for you help..it is very nice of you to,take the time...

    GM

    I used to make a milkshake
    I used to make a milkshake with Ensure, ice cream of your choice (mine was strawberry)and something called Naturade Weight Gain which you can get at most health food stores. The Naturade is flavor neutral and depending on how much I used I could get between 1000 and 1500 calories in a 16oz shake. I am still hooked on the milk shakes but only with soy milk and ice cream these days.
    John
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
    GM said:

    Thanks for,the words of wisdom
    It may be that the magic mouthwash is part of the problem in that I improbably use it too much but without it, the pain is virtually unbearable. I am eating oatmeal a couple times a day but have to,power it down right after the deadening mouthwash to,avoid the extreme burn. If anyone has alternative mouthwash or other medical actions I should take I am wide open.. I am trying to be patient but the slow pace is so incredibly frustrating when you cannot see progress that I have to wonder if I am missing an option that might speed things up..

    Also, does anyone have a recommendation on a website that offers recipe options for blender or food processor savory meals that might taste gooe, be high in caloric content .. Something like a warm cheeseburger slurry has me thinking it might be worth a try..


    Thanks to all for you help..it is very nice of you to,take the time...

    GM

    I have had the thought of blending
    a cheeseburger also:). What works for me is starting with 8 oz of ensure, then adding to it. ice cream ( for a long time I couldnt do that cause cold hurt), fruit (bananas, strawberries and peaches are best), caramel, peanut butter, honey, cheesecake filling (check out the calories!),pudding, yogurt to bring up to 16 oz. For the first several months I chowed down on this at the kitchen sink, so that i had everything ready to go. i would mix, power down my 16 ounces, the rinse with salt/soda solution, then use my magic mouthwash. that way i got 48 oz. of fluid, and over 2000 cal per day withouy killing myself. Doesnt the superthread have recipes for high cal supplements?

    Btw, with this much pain, what are you on for control?

    Pat
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #7
    longtermsurvivor said:

    I have had the thought of blending
    a cheeseburger also:). What works for me is starting with 8 oz of ensure, then adding to it. ice cream ( for a long time I couldnt do that cause cold hurt), fruit (bananas, strawberries and peaches are best), caramel, peanut butter, honey, cheesecake filling (check out the calories!),pudding, yogurt to bring up to 16 oz. For the first several months I chowed down on this at the kitchen sink, so that i had everything ready to go. i would mix, power down my 16 ounces, the rinse with salt/soda solution, then use my magic mouthwash. that way i got 48 oz. of fluid, and over 2000 cal per day withouy killing myself. Doesnt the superthread have recipes for high cal supplements?

    Btw, with this much pain, what are you on for control?

    Pat

    Alternative
    GM,

    I'm really sorry to hear you are still suffering so badly. The others said most everything so I guess time is what you need to heal. I too had a partial tongue removal and it was the worst pain I've ever experienced. Others here who have had a similar surgery say theirs was not that bad. So it must be that everyone feels pain and heals differently.

    You were asking if there was something other than the Magic Mouthwash. My Dr. prescribed Lidocaine Viscous 2%. It is the main ingredient in the MM that numbs your mouth. It doesn't taste like much and is really thick. I couldn't use it in the beginning because I'd cough so hard trying to swallow it. And I wasn't even sure if I was supposed to swallow it. (yes, I was) But it sure does numb the mouth nicely. And just like the MM, if you use it too often it may not work as well as it should. Ask your doctor if it would be a good fit with your case. I only use it now when my throat is really sore. Mostly I use the MM whenever possible. I finished my rads on April 3rd so I'm only 5-6 weeks out and still have throat pain and fatigue.

    I wish you the best,

    Tom
  • GM
    GM Member Posts: 8
    #8
    longtermsurvivor said:

    I have had the thought of blending
    a cheeseburger also:). What works for me is starting with 8 oz of ensure, then adding to it. ice cream ( for a long time I couldnt do that cause cold hurt), fruit (bananas, strawberries and peaches are best), caramel, peanut butter, honey, cheesecake filling (check out the calories!),pudding, yogurt to bring up to 16 oz. For the first several months I chowed down on this at the kitchen sink, so that i had everything ready to go. i would mix, power down my 16 ounces, the rinse with salt/soda solution, then use my magic mouthwash. that way i got 48 oz. of fluid, and over 2000 cal per day withouy killing myself. Doesnt the superthread have recipes for high cal supplements?

    Btw, with this much pain, what are you on for control?

    Pat

    Thx Pat.. I will try those suggestions
    For the pain med question, I am also taking Fentenal patch at 100 mcgr every three days, hydrochodone every four hour hours or as needed and Aleve as needed. For the most part I am comfortable but it is almost as if my tongue is broken into separate quadrants and the intense pain areas move from one area to another with no definitive,reason. The other killer is if I end up sleeping with my mouth even slightly open I will wake in extreme pain that the magic mouth wash has to put out.
  • GM
    GM Member Posts: 8
    #9
    longtermsurvivor said:

    I have had the thought of blending
    a cheeseburger also:). What works for me is starting with 8 oz of ensure, then adding to it. ice cream ( for a long time I couldnt do that cause cold hurt), fruit (bananas, strawberries and peaches are best), caramel, peanut butter, honey, cheesecake filling (check out the calories!),pudding, yogurt to bring up to 16 oz. For the first several months I chowed down on this at the kitchen sink, so that i had everything ready to go. i would mix, power down my 16 ounces, the rinse with salt/soda solution, then use my magic mouthwash. that way i got 48 oz. of fluid, and over 2000 cal per day withouy killing myself. Doesnt the superthread have recipes for high cal supplements?

    Btw, with this much pain, what are you on for control?

    Pat

    Thx Pat.. I will try those suggestions
    For the pain med question, I am also taking Fentenal patch at 100 mcgr every three days, hydrochodone every four hour hours or as needed and Aleve as needed. For the most part I am comfortable but it is almost as if my tongue is broken into separate quadrants and the intense pain areas move from one area to another with no definitive,reason. The other killer is if I end up sleeping with my mouth even slightly open I will wake in extreme pain that the magic mouth wash has to put out.

    GM
  • GM
    GM Member Posts: 8
    #10
    longtermsurvivor said:

    I have had the thought of blending
    a cheeseburger also:). What works for me is starting with 8 oz of ensure, then adding to it. ice cream ( for a long time I couldnt do that cause cold hurt), fruit (bananas, strawberries and peaches are best), caramel, peanut butter, honey, cheesecake filling (check out the calories!),pudding, yogurt to bring up to 16 oz. For the first several months I chowed down on this at the kitchen sink, so that i had everything ready to go. i would mix, power down my 16 ounces, the rinse with salt/soda solution, then use my magic mouthwash. that way i got 48 oz. of fluid, and over 2000 cal per day withouy killing myself. Doesnt the superthread have recipes for high cal supplements?

    Btw, with this much pain, what are you on for control?

    Pat

    Thx Pat.. I will try those suggestions
    For the pain med question, I am also taking Fentenal patch at 100 mcgr every three days, hydrochodone every four hour hours or as needed and Aleve as needed. For the most part I am comfortable but it is almost as if my tongue is broken into separate quadrants and the intense pain areas move from one area to another with no definitive,reason. The other killer is if I end up sleeping with my mouth even slightly open I will wake in extreme pain that the magic mouth wash has to put out.

    GM
  • GM
    GM Member Posts: 8
    #11
    tommyodavey said:

    Alternative
    GM,

    I'm really sorry to hear you are still suffering so badly. The others said most everything so I guess time is what you need to heal. I too had a partial tongue removal and it was the worst pain I've ever experienced. Others here who have had a similar surgery say theirs was not that bad. So it must be that everyone feels pain and heals differently.

    You were asking if there was something other than the Magic Mouthwash. My Dr. prescribed Lidocaine Viscous 2%. It is the main ingredient in the MM that numbs your mouth. It doesn't taste like much and is really thick. I couldn't use it in the beginning because I'd cough so hard trying to swallow it. And I wasn't even sure if I was supposed to swallow it. (yes, I was) But it sure does numb the mouth nicely. And just like the MM, if you use it too often it may not work as well as it should. Ask your doctor if it would be a good fit with your case. I only use it now when my throat is really sore. Mostly I use the MM whenever possible. I finished my rads on April 3rd so I'm only 5-6 weeks out and still have throat pain and fatigue.

    I wish you the best,

    Tom

    Thx
    Appreciate it Tom.. I wish you,all the best to a continued swift recovery and thank you for the input..
  • GM
    GM Member Posts: 8
    #12
    tommyodavey said:

    Alternative
    GM,

    I'm really sorry to hear you are still suffering so badly. The others said most everything so I guess time is what you need to heal. I too had a partial tongue removal and it was the worst pain I've ever experienced. Others here who have had a similar surgery say theirs was not that bad. So it must be that everyone feels pain and heals differently.

    You were asking if there was something other than the Magic Mouthwash. My Dr. prescribed Lidocaine Viscous 2%. It is the main ingredient in the MM that numbs your mouth. It doesn't taste like much and is really thick. I couldn't use it in the beginning because I'd cough so hard trying to swallow it. And I wasn't even sure if I was supposed to swallow it. (yes, I was) But it sure does numb the mouth nicely. And just like the MM, if you use it too often it may not work as well as it should. Ask your doctor if it would be a good fit with your case. I only use it now when my throat is really sore. Mostly I use the MM whenever possible. I finished my rads on April 3rd so I'm only 5-6 weeks out and still have throat pain and fatigue.

    I wish you the best,

    Tom

    Thx
    Appreciate it Tom.. I wish you,all the best to a continued swift recovery and thank you for the input..
  • GM
    GM Member Posts: 8
    #13
    tommyodavey said:

    Alternative
    GM,

    I'm really sorry to hear you are still suffering so badly. The others said most everything so I guess time is what you need to heal. I too had a partial tongue removal and it was the worst pain I've ever experienced. Others here who have had a similar surgery say theirs was not that bad. So it must be that everyone feels pain and heals differently.

    You were asking if there was something other than the Magic Mouthwash. My Dr. prescribed Lidocaine Viscous 2%. It is the main ingredient in the MM that numbs your mouth. It doesn't taste like much and is really thick. I couldn't use it in the beginning because I'd cough so hard trying to swallow it. And I wasn't even sure if I was supposed to swallow it. (yes, I was) But it sure does numb the mouth nicely. And just like the MM, if you use it too often it may not work as well as it should. Ask your doctor if it would be a good fit with your case. I only use it now when my throat is really sore. Mostly I use the MM whenever possible. I finished my rads on April 3rd so I'm only 5-6 weeks out and still have throat pain and fatigue.

    I wish you the best,

    Tom

    Thx
    Appreciate it Tom.. I wish you,all the best to a continued swift recovery and thank you for the input..
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #14
    GM said:

    Thx Pat.. I will try those suggestions
    For the pain med question, I am also taking Fentenal patch at 100 mcgr every three days, hydrochodone every four hour hours or as needed and Aleve as needed. For the most part I am comfortable but it is almost as if my tongue is broken into separate quadrants and the intense pain areas move from one area to another with no definitive,reason. The other killer is if I end up sleeping with my mouth even slightly open I will wake in extreme pain that the magic mouth wash has to put out.

    there is no need to kill yourself
    trying to convert to entirely oral feedings. You will heal in time. You need to get something down by mouth every day. But you have a tube. There are many on this site that needed the tube for a year or more. Dont panic over this. If it hurts too much, dont kill yourself.



    Pat
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #15
    GM said:

    Thx Pat.. I will try those suggestions
    For the pain med question, I am also taking Fentenal patch at 100 mcgr every three days, hydrochodone every four hour hours or as needed and Aleve as needed. For the most part I am comfortable but it is almost as if my tongue is broken into separate quadrants and the intense pain areas move from one area to another with no definitive,reason. The other killer is if I end up sleeping with my mouth even slightly open I will wake in extreme pain that the magic mouth wash has to put out.

    GM

    3 months for me too
    Hi GM....

    I had base of tongue stage III with 1 lymph node. I kept asking the doctor why I was so far behind getting past the pain ....he finally looked at me and said "your impatient" ....he said he was glad I was bc that meant I was a fighter.

    So GM ...I still have my tube but use it rarely anymore....at 3 months and 1 week almost to the day I woke up and it was like the pain was half of what it was and the mucous was gone? Yours may take longer or not than mine, but the bottom line is it will go away eventually ....like others said on this post ...some take longer than others ...it's not a bad thing it's just your body or just the way it is.

    Now 3.5 months after my last treatment I am off all pain meds, just taking Narco for the withdrawal symptoms I had for being on fentynal patch for so long ... :)

    Best to you GM ....your day is coming.

    Tim / Idaho
    timcogdill@yahoo.com

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