Burning Burn Tongue After Radiation Please Help

Bunnymom
Bunnymom Member Posts: 212 Member
edited January 2015 in Head and Neck Cancer #1

I am 4-1/2 months post chemo and radiation for tongue cancer. I had the cancer excised from the left side of my tongue 16 months ago. T1N3

The problem that I have is a burning and painful tongue. The burning feeling extends from the point of excision on the left, all the way around to the right side of my tongue along the side of my tongue and partially on the top.

is this a side effect from radiation? It's unrelenting. I'm wondering if anyone can help me with this topic. How long will it last? Will it ever go away? Is it nerve damage? Is there anything I can do to help relieve the burning and pain? would I still experience burning after ending treatment 4-1/2 months Ago?

At first I was terrified the pain and burning was from a reoccurence but I've had two scans since finishing treatment and both were NED! I hope and pray it is okay.

Other than this issue, I'm doing very well. I do still have mucus mostly in the back of my throat. Feels almost like post nasal drip.

My swallowing has improved and saliva somewhat improved. I'm eating almost anything as along as I have water. I just need some relief from this burning tongue. Any help, advice or reassurances would be helpful.

thank you all very much.

 

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    bunny, i don't know anything

    bunny, i don't know anything about that but wanted to say i am praying for releif for you.  I'm sure the others will chime in and hopefully they will have some solutions for you.  congrats on the NED and here's to many more. 

    God bless you,

    dj

  • wmc
    wmc Member Posts: 1,804
    When in doubt....Call Dr

    When you have call your Dr just to let him know. I never had radiation, but it does sound like a side effect from that or even just getting nerve feeling back. The nerves can feel like a bunch of needles or a feeling like burning. You'll have a better Idea when the others chime in.

    Bill

  • Bunnymom
    Bunnymom Member Posts: 212 Member

    bunny, i don't know anything

    bunny, i don't know anything about that but wanted to say i am praying for releif for you.  I'm sure the others will chime in and hopefully they will have some solutions for you.  congrats on the NED and here's to many more. 

    God bless you,

    dj

    thank you dj for your

    thank you dj for your prayers. It means a lot to me

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    wmc said:

    When in doubt....Call Dr

    When you have call your Dr just to let him know. I never had radiation, but it does sound like a side effect from that or even just getting nerve feeling back. The nerves can feel like a bunch of needles or a feeling like burning. You'll have a better Idea when the others chime in.

    Bill

    Bill, the oncologist told me

    Bill, the oncologist told me that even though they target the radiation, there is still scatter or, as he said, "it (rad) goes everywhere". He thinks it is a radiation side effect. My ENT surgeon thought it was nerve damage. So, it doesn't sound like they really know because if it's nerve damage, there is no test for that. 

    thank you

     

  • MrsBD
    MrsBD Member Posts: 615 Member
    Burning Tongue

    Bunnymom, you sound like me. I'm 3 1/2 months post chemo and radiation, but no surgery. The right side of my tongue burns, from the tip back and even into my ear. The PET scan showed no cancer but something to be watched. One week later my ENT did a scope and said what he saw is consistent with radiation damage. He said it can take months to heal, even a year. My radiation oncologist also took a look (Why not? Everyone else is!) and said the same thing. She said nerve damage may take even longer, but it can heal. I also have improved to the point of almost normal with swallowing and that annoying abundance of mucus. My saliva is good, thanks to acupuncture, but my throat gets dry feeling. When I read other people's posts, I feel so very blessed to be almost back to normal so soon. As far as the burning, cool water helps, as does avoiding sugary, salty, or spicy foods. If it gets too bad, you might try some Magic Mouthwash. I hope you heal quickly!

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    MrsBD said:

    Burning Tongue

    Bunnymom, you sound like me. I'm 3 1/2 months post chemo and radiation, but no surgery. The right side of my tongue burns, from the tip back and even into my ear. The PET scan showed no cancer but something to be watched. One week later my ENT did a scope and said what he saw is consistent with radiation damage. He said it can take months to heal, even a year. My radiation oncologist also took a look (Why not? Everyone else is!) and said the same thing. She said nerve damage may take even longer, but it can heal. I also have improved to the point of almost normal with swallowing and that annoying abundance of mucus. My saliva is good, thanks to acupuncture, but my throat gets dry feeling. When I read other people's posts, I feel so very blessed to be almost back to normal so soon. As far as the burning, cool water helps, as does avoiding sugary, salty, or spicy foods. If it gets too bad, you might try some Magic Mouthwash. I hope you heal quickly!

    thank you SO much for your

    thank you SO much for your reply. I'm about 4 1/2 months post. This has been driving me crazy. I had treatment on my left side and the burning /pain is mostly on the right. I didn't understand why until the Onc told me that radiation isn't just limited to the treatment area. I was so scared something was wrong. I've had 2 scans since October the last being right before Christmas. Both clear. I have no sores (although I had one that went away). If you look at my tongue, it looks pretty normal. The oncologist told me radiation damage as well. I can tolerate it, but it would be helpful to know this will eventually go away.

    I'm comsidering acupuncture too (for dry mouth). I want to start next month. What has really helped me is using a cool mist humidifier. I was surprised at how much this has helped with the dry mouth at night. Give it a try.

    I too feel very blessed. I am doing quite well considering everything But every little twinge makes you take notice. Thank you again.

  • Sailor123
    Sailor123 Member Posts: 97
    Bunnymom said:

    thank you SO much for your

    thank you SO much for your reply. I'm about 4 1/2 months post. This has been driving me crazy. I had treatment on my left side and the burning /pain is mostly on the right. I didn't understand why until the Onc told me that radiation isn't just limited to the treatment area. I was so scared something was wrong. I've had 2 scans since October the last being right before Christmas. Both clear. I have no sores (although I had one that went away). If you look at my tongue, it looks pretty normal. The oncologist told me radiation damage as well. I can tolerate it, but it would be helpful to know this will eventually go away.

    I'm comsidering acupuncture too (for dry mouth). I want to start next month. What has really helped me is using a cool mist humidifier. I was surprised at how much this has helped with the dry mouth at night. Give it a try.

    I too feel very blessed. I am doing quite well considering everything But every little twinge makes you take notice. Thank you again.

    Hi Bunnymom:
    I am 8 months

    Hi Bunnymom:

    I am 8 months post treatment and up until one month ago my tongue was still burned and sore.  It is much better now.

    Hang in there.

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    Sailor123 said:

    Hi Bunnymom:
    I am 8 months

    Hi Bunnymom:

    I am 8 months post treatment and up until one month ago my tongue was still burned and sore.  It is much better now.

    Hang in there.

    sailor123. Thank you for

    sailor123. Thank you for sharing your experience with me. It really helps to know this is something that will eventually go away.