When did your tongue stop burning?

stevenpepe
stevenpepe Member Posts: 234
edited November 2016 in Head and Neck Cancer #1

After nearly 5 months post rad, I'm still dealing with a burning tongue. Is there an end in sight and what can I do to improve it? It's really affecting my appetite. Since my last surgery October 7th, I'm down nearly 20 lbs pre cancer. I can't seem to eat enough these days.

Comments

  • Josephwc
    Josephwc Member Posts: 69
    edited November 2016 #2
    I am 6 months out of surgery have a petscan coming up this week

    Radical dissection on left side, 52 nodes remove with no matatasis, second surgery to remove infection, 30 rads, and one biopsy and no malignancy. My tongue still burns but not as bad. As I have said before, I'm living in India so I can't seem to hide from the spice. I can eat it now but not without pain later. I try at all cost to avoid all spices including pepper. A few months back I couldn't think of eating it. Things are changing but it is slow. just the other day I was able to enjoy buttery popcorn. A good flick, comfy VIP seating in an IMAX theatre, and a determined craving for comfort food precancer will find its way. My goal is Spicey food 2017!

     

  • Sandraw
    Sandraw Member Posts: 40
    #3
    Hi

    Sorry you're having such a rough time. My Rad oncologist recommended Honey for me for all weird throat tongue mouth pains and of course magic mouthwash. I found out on my own that yogurt helped heal the sores quicker, maybe my imagination but it seemed that way to me. Keeping you in my thoughts and prayers.

  • georgiasurfer
    georgiasurfer Member Posts: 63 Member
    #4
    L Glutamine

    Have you tried L Glutamine powder?  It really seemed to make a difference for my husband.  He too is struggling with weight loss though. Looking back he should have gotten a feeding tube. Hang in there. Your prior posts helped us during treatment tremendously and I was so sad to hear your recent news. Sending best wishes your way. 

  • stevenpepe
    stevenpepe Member Posts: 234
    #5
    georgiasurfer said:

    L Glutamine

    Have you tried L Glutamine powder?  It really seemed to make a difference for my husband.  He too is struggling with weight loss though. Looking back he should have gotten a feeding tube. Hang in there. Your prior posts helped us during treatment tremendously and I was so sad to hear your recent news. Sending best wishes your way. 

    I used it in my shakes. Is

    I used it in my shakes. Is there a better way to apply it? I am starting round 2 of rads today. I will post another topic for everyone's entertainment :)

  • georgiasurfer
    georgiasurfer Member Posts: 63 Member
    #6
    With water

    He just put a heaping teaspon in about 4

    or 5 ounces of water 3 times a day. It helped keep him hydrated too.  He swished and swallowed it And sometimes Gargled It. 

    Good luck.  Will be thinking of you. 

  • Sandraw
    Sandraw Member Posts: 40
    edited November 2016 #7
    Hi

    I also had Neurontin 300mg 3 x a day prescribed by Rad oncologist. It's usually for Diabetic nerve pain but Rad onc said they are using for Rad induced mouth, throat nerve pain.

     

  • cardoza33
    cardoza33 Member Posts: 81
    #8
    stevenpepe said:

    I used it in my shakes. Is

    I used it in my shakes. Is there a better way to apply it? I am starting round 2 of rads today. I will post another topic for everyone's entertainment :)

    What are you eating?

    I was making shakes that had strawberrys and yogurt in them and talked to another throut cancer survivor who told me to quit that with all the sugar.  My mouth improved.  I was in the weight gaining mode trying to get as many calories as possible.  I now make a smoothie with coconut milk, almond butter and protien powder. My mouth improved.  My last treatment was back in Feb., its taken along time. Still can't eat things with spice, but my tongue is improving.  I barely notice it now unless I eat something that sets it off.

     

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited November 2016 #9
    Burning Pain

    Hi Steve,  Haven't been here for a couple months.  Mother passed, another Family member diagnosised with Kidney Cancer. Been hectic.  I am doing excellent.  I found a tremendous Dentist that is knowledged in Throat Cancer & Dry Mouth, Nerve Pain.  Wish I would have found him sooner.  I am now 7 mo out of 7 Intense wks of Chemo & Rads, together weekly.  Yes, the worst pain I have ever encountered.   My mouth was so bad could not even drink water.  Feeding tube was interred @ 3  wks.  All in all 40 lbs gone...99 lbs dripping wet.  But, the Doctors have found Me to be a bit of a miracle.  This new Dentist is to thank for My much of My improvement, burning nerve pain wise.  He first prescribed taking the Gabapentin.  One wk in started having restless leg and hair falling out.  So we decided to go with tongue lazering.  Light rounds of lazer treatments on both sides & tip.  I no longer have nerve pain and can eat spicier food.  As soon as my lower Throat finishes healing inside from the Rads, the skis the limit.  Wine by New Years on the agenda.  If you read my past posts, you will see what I went thru and all the help this forum has given Me to be the best I can be.  I hope you can find relief and I am so very sorry you have to go thru treatment again.  I was surprised that they only put you thru Rads first time around.  Hope this time it stick.  Have a Good Holiday & heal quickly.    Lisa

  • Tonita
    Tonita Member Posts: 197 Member
    #10
    My tongue burns sometimes and

    My tongue burns sometimes and it's reall irritated to but for different reasons.  I use a rinse of baking soda and salt which soothes my tongue.  I do hold it in my mouth for a while.  It's a temporary relief.

     

  • MJG1
    MJG1 Member Posts: 137 Member
    edited December 2016 #11
    georgiasurfer said:

    L Glutamine

    Have you tried L Glutamine powder?  It really seemed to make a difference for my husband.  He too is struggling with weight loss though. Looking back he should have gotten a feeding tube. Hang in there. Your prior posts helped us during treatment tremendously and I was so sad to hear your recent news. Sending best wishes your way. 

    benecalorie

    Hi,

    Have you tried Benecalorie?  I ordered some on line.  It's 350 calories and you can add it to shakes to help with weight gain.  It looks nasty and separates in the container, but if you put it in a blender it adds no taste, but adds some protein and much needed calories.

    Good luck

    Margi Greene

    St. Charles, MO

  • Raddude
    Raddude Member Posts: 84
    edited December 2016 #12
    L Glutamine in water with

    L Glutamine in water with swish and swallow worked for me.

     

  • RottiesMom
    RottiesMom Member Posts: 167
    #13
    Sandraw said:

    Hi

    I also had Neurontin 300mg 3 x a day prescribed by Rad oncologist. It's usually for Diabetic nerve pain but Rad onc said they are using for Rad induced mouth, throat nerve pain.

     

    Me too!

    I was also on the Neurontin, same dosage.  I really think it helped with the burning pain!

    Joanne 

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