Burning Tongue Oral Mucosa Changes Post Radiation & Chemo

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

Has anyone had post radiation / chemo changes to your oral mucosa? I have burning across the front top and tip of my tongue along with reoccurring tongue ulcers (no cancer). The ulcers come, heal and come back again. My ENT says this is a complication of treatment. 

I'm 5 months post treatment. Not sure how long this will continue. Any ideas? Can you share your experiences? Scans in Oct & Dec. NED. 

Thanks!

Comments

  • lornal
    lornal Member Posts: 428
    #2
    tongue

    I got ulcers on my tongue and inside my mouth your several years after radiation.

    I think my tounge hurt too for quite some time.

    Lorna 2007 & 2014

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    #3
    lornal said:

    tongue

    I got ulcers on my tongue and inside my mouth your several years after radiation.

    I think my tounge hurt too for quite some time.

    Lorna 2007 & 2014

    Lornal

    thanks for your input. It's helpful to know that I'm not alone in experiencing these issues. 

  • donfoo
    donfoo Member Posts: 1,771 Member
    #4
    long term side effects

    Hi Mary,

    Good to see visiting.

    You are becoming more familiar with the term "the new normal". We all come back to living post tx with something not as before. I am not sure if the specific mouth sores are a side effect of treatment or not. Ask your oncologists for clarification. But in general, we all have some sort of condition that reminds of the trauma our bodies endured during treatment.

    There are many treatments to manage these side effects so make sure to stay in close contact with your ENT and oncology team as necessary to deal with side effects as they show up.

    Don

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    #5
    donfoo said:

    long term side effects

    Hi Mary,

    Good to see visiting.

    You are becoming more familiar with the term "the new normal". We all come back to living post tx with something not as before. I am not sure if the specific mouth sores are a side effect of treatment or not. Ask your oncologists for clarification. But in general, we all have some sort of condition that reminds of the trauma our bodies endured during treatment.

    There are many treatments to manage these side effects so make sure to stay in close contact with your ENT and oncology team as necessary to deal with side effects as they show up.

    Don

    Hi Don!

    yes. I'm back :-)

    I've been in contact with the ENT and oncologist. ENT thinks it's a complication from treatment. Onc concurs. Says chemo intensifies rad which of course, we all know. Some are slower to recover than others. My tongue has taken a beating! First the surgery then the treatment. The latest sore spot is a repeat of one I had around Christmas. It cleared up but came back again a few days ago. Frustrating. My understanding is changes to your oral mucosa is not unusual after treatment. If you think about it, this makes sense. Even though radiation mapping is designed to precisely target the desired field, radiation is scattered all around the treatment room. If this were not the case, they wouldn't have those thick doors to close off the treatment room. :-0 Perhaps some are more susceptible to radiation damage than others or it might be due to the delivery of the radiation itself. 

    M

  • donfoo
    donfoo Member Posts: 1,771 Member
    #6
    Bunnymom said:

    Hi Don!

    yes. I'm back :-)

    I've been in contact with the ENT and oncologist. ENT thinks it's a complication from treatment. Onc concurs. Says chemo intensifies rad which of course, we all know. Some are slower to recover than others. My tongue has taken a beating! First the surgery then the treatment. The latest sore spot is a repeat of one I had around Christmas. It cleared up but came back again a few days ago. Frustrating. My understanding is changes to your oral mucosa is not unusual after treatment. If you think about it, this makes sense. Even though radiation mapping is designed to precisely target the desired field, radiation is scattered all around the treatment room. If this were not the case, they wouldn't have those thick doors to close off the treatment room. :-0 Perhaps some are more susceptible to radiation damage than others or it might be due to the delivery of the radiation itself. 

    M

    side effects

    Hi Mary,

    Over the past several months I have been having a lot of pain just below my right shoulder joint. I thought it was because I spent too much time at the screen and not taking enough breaks to stretch and such. The past month I have made serious efforts to exercise my shoulder yet I still have pain the in nerves/muscle tissue just below the shoulder.

    I live with tightened muscles and neck cramping due to radiation. This I knew but I just learned that the effects can go much beyond the direct radiated area. I am now going to seek PT from someone who specializes in treating patients who are experience post radiation side effects.

    Learn something new every day.

    Don

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #7
    bunny, my last rad was

    bunny, my last rad was 10/22/09 and my last surgery for recurrence was 2/28/12 with 4 surgeries following due to complications.  anyway, my mouth and tongue have started burning for no reason and sometimes when i eat.  i just spoke to my ent about that on Feb. 4.  they checked my mouth but didn't see anything so said it's nothing to worry about.  just weird that its been this long and it is just now starting.  i hope yours is also nothing to worry about.

    God bless you,

    dj

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
    bunny, my last rad was

    bunny, my last rad was 10/22/09 and my last surgery for recurrence was 2/28/12 with 4 surgeries following due to complications.  anyway, my mouth and tongue have started burning for no reason and sometimes when i eat.  i just spoke to my ent about that on Feb. 4.  they checked my mouth but didn't see anything so said it's nothing to worry about.  just weird that its been this long and it is just now starting.  i hope yours is also nothing to worry about.

    God bless you,

    dj

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    #9
    debbiejeanne said:

    bunny, my last rad was

    bunny, my last rad was 10/22/09 and my last surgery for recurrence was 2/28/12 with 4 surgeries following due to complications.  anyway, my mouth and tongue have started burning for no reason and sometimes when i eat.  i just spoke to my ent about that on Feb. 4.  they checked my mouth but didn't see anything so said it's nothing to worry about.  just weird that its been this long and it is just now starting.  i hope yours is also nothing to worry about.

    God bless you,

    dj

    djmy ENT has checked my

    dj

    my ENT has checked my mouth and tongue too. Although I've had a sore, it has appeared, healed and reappeared and healed again. It's not cancer but a complication of treatment = chemo radiation

    im sorry your having this burning mouth and tongue issue. I hope you feel better soon. The tip and part of the top of my tongue feels like it's been burnt as well. If you think about it, it probably has been burnt by the radiation!

  • wmc
    wmc Member Posts: 1,804
    #10
    Sorry you are going through this.

    Sorry you are having these side effects.

    Bill

  • hwt
    hwt Member Posts: 2,328 Member
    #11
    debbiejeanne said:

    bunny, my last rad was

    bunny, my last rad was 10/22/09 and my last surgery for recurrence was 2/28/12 with 4 surgeries following due to complications.  anyway, my mouth and tongue have started burning for no reason and sometimes when i eat.  i just spoke to my ent about that on Feb. 4.  they checked my mouth but didn't see anything so said it's nothing to worry about.  just weird that its been this long and it is just now starting.  i hope yours is also nothing to worry about.

    God bless you,

    dj

    Tongue

    I also have sensations of a burnt tongue from time to time but just on half. no ulcerations though. 

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    #12
    wmc said:

    Sorry you are going through this.

    Sorry you are having these side effects.

    Bill

    thanks Bill....

    thanks Bill....

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