Three months post treatment with Ongoing Mouth Pain

Posted by megatera @megatera, 2 days ago

Hi everyone,

I’m so grateful to have this forum! I’m a 43 year old female who received 35 rounds of radiation with chemo for metastatic squamous cell carcinoma in my tonsils and right gland between March and May of this year. My last treatment was three months ago, and my mouth continues to have extreme pain and sensitivity. My oncologist said I have slow healing, but wanted to see if anyone else was affected by this? I’m trying to be patient but the last three months have been such an emotional and physical struggle. I am normally a positive person but I can’t help but feel immense frustration that I can’t enjoy food or even brush my teeth with normal toothpaste (I use a fluoride kids toothpaste). My mouth feels like it’s constantly on fire. I can taste more or less, but also have teeth sensitivity. Can anyone help with some insight?

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So as for me I continued with my pain management regimen for a few months post treatments and weened myself off from them before my oncologist wanted me to.
So with that said I never experienced the mouth “pain” but I couldn’t eat for a long time!
I continued with the tube feeding until I was able to eat oatmeal and then that was my three meals per day for a long time and then I asked for my tube and port to be removed. I knew if I didn’t have the tube I would have no choice but to start eating solid food. This was a very slow process with many close calls of chocking!

As for taste; I couldn’t taste anything for about a year. Nearly 9 years later I still can’t taste chocolate as I remember it tasting but everything else has returned.

As for toothpaste; I brushed and continue to brush several times per day.
I use a Waterpik first followed by floss if needed, followed by a whitening paste. Rinse and apply a mixture of Sensodyne and a prescription fluoride paste(purchased from dentist for $20.00), I brush and spit but not rinse and allow it to set.
Be sure to stay current with your 6 month dental visits and have them fluoride your teeth. My insurance covers one fluoride treatment per year and the second one cost me $40.00.

Maybe you could get a prescription for a liquid pain medication that you could swish before you swallow!

Hang in there as it will get better!
Jody

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Hi @megatera Slow healing? Not slow by any standards when it comes to radiation treatments. This is similar to an internal burn. And as we know, burns take forever to heal. A year from now most of your issues should be fading away but as for this year, this summer especially, this all seems normal compared to most of us.
I had mouth sores, red spots, gum bleeds, tongue sores, all the fun stuff for more than a year. Measured over months rather than days however, I could see improvement month to month.
Try warm salt-water rinses. It might sting a little but they seemed to help me a great deal. It certainly lowered the sensitivity and pain levels within a few days. This simple solution is both doctor and mentor recommended.

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Hi Megatera. It's been 19 years, but I still recall how uncomfortable it was post-treatment. I couldn't taste sugar, so anything requiring sweetening didn't taste very good, especially chocolate. Biotene was my savior when it came to a soar mouth. Then they changed their formula unbeknownst to me, and within a weak my mouth was raw. They brought back their original formula as a gentle alternative, but I see they have now discontinued that. Fortunately for me, I can use their regular toothpaste these days. You will find the next year frustrating due to how little you know about what is coming. From this forum, it is clear things are better now than when I went through it. Good luck to you.

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Use three times a day rinses and gargles x 4 with warm salt water & baking soda ( to acidify) and this helps immensely.

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