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Chemo Radiation? Nerve? Injury Burning Tongue

Bunnymom's picture
Bunnymom
Posts: 208
Joined: Apr 2014

I"m 7.5 months post treatment and am suffering from a burning painful tongue. It almost feels like its scalded.

The doctors tell me this is a complication from treatment. Possibly nerve injury. Possibly a complication from chemo and radiation. Med Onc said it could take a year, maybe even longer to recover from treatment. My tongue is pretty beat up. I get intermittent canker sores which take quite a while to heal bu they eventually do. I understand the oral mucosa can be very damaged and sensitive.

My scans are NED and an oral cancer screen at the dentist was negative. 

Has anyone else experienced painful burning tongue / mouth? How long before it goes away? Is there any treatment?

I'm having a very difficult time with this. It's hard to deal with the pain and burning.  

Thank you for the help and support!

OrchidNancy's picture
OrchidNancy
Posts: 23
Joined: Feb 2015

Hi Bunnymom,

I can relate to what you're experiencing - although through my husband. He still has intense pain in his throat - his treatments ended 2/5/15. His pain is not improving. The ENT can see what he's experiencing through the scope and thinks it's infection - so he's on antibiotcs for possible bacterial and fungal causes. The pain is as intense now (7 out of 10) as he said he had at anytime. He doesn't really get any relief with pain meds - esp not from ibuprofen, but even with a norco 7.5 - it just takes the edge off. It's frustrating. His voice is very deep and husky. He is not himself and just wishes he could feel somewhat like he did pre-treatment again. This new normal is not acceptable. I am looking for new possible ENT's in the area.

I am sorry to hear of your continued pain and burning. I really hope you get some relief soon. Just know that you are not alone. Sorry I couldn't be of any help with concrete advice. 

Bunnymom's picture
Bunnymom
Posts: 208
Joined: Apr 2014

Thank you for trying to help me Nancy. Your husband is only a couple of months post treatment. It will take time. Hopefully, the RX will help him too.

I'm 7.5 months out and have this burning and sometimes painful mouth and tongue. I'm looking for others out there who can offer some help or encouragement.

my doctors just told me it's going to take at least a year, maybe longer to recover. I never expected to hear this but hopefully this information will help you too.

OrchidNancy's picture
OrchidNancy
Posts: 23
Joined: Feb 2015

Thank you for your encouragement. I do appreciate it. A year (or longer) is a very long time to be in this type of pain. I wonder if something like viscous lidocaine would numb it for you? Or a magic/miracle mouthwash with lidocaine/benadryl/maalox? I'm not sure what you've tried so far but hope you find something that helps!

Nancy

 

Bunnymom's picture
Bunnymom
Posts: 208
Joined: Apr 2014

Nancy,

I have the lidocaine. I do use it sometimes. It's all so daunting. I know a year does seem like a long time and it is. I never thought it would take so long to feel better. It seems it comes gradually but it's not linear. Some days seem better than others. It's just a long process. I'm 7.5 months post treatment. When I look back even a few months ago, I can see that I'm better. I just have to get this burning tongue issues addressed. I hope there are other who can help too.

thank you so much for your post.

hwt's picture
hwt
Posts: 2330
Joined: Jun 2012

Could be thrush which is treatablle in a few days with the right drugs. I had it several times.

Bunnymom's picture
Bunnymom
Posts: 208
Joined: Apr 2014

wouldn't I be able to see something on my tongue if it was thrush?

i don't think it's thrush 

MGC
Posts: 62
Joined: May 2010



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I can relate more than you know. I am five years out and up until about 6 or 8 months ago i still suffered from a burning sensation on one spot on my tongue. The savored the magic mouthwash as mentioned here. A tiny bit of it would solve the problem and sometimes I used it a few times a day.

Finally I ran out and resorted to a product called Orabase. That’s what the dentist uses to numb your gums before he gives you a shot. I used just a tiny bit of that on my tongue and the pain would disappear. I finally quit having pain about 6 months ago and low and behold the nerve in my tongue started dying. That’s another issue altogether.

At any rate, you can expect some pain for awhile. Everyone is different. Keep in touch with the doc because Thrush is bad news and it happens much more frequently to head and neck cancer people. Antibiotics will make Thrush worse so make sure you get properly diagnosed. Throat infections happen that can be treated with antibiotics as i had experienced those as well but Thrush is different.

Hope this helps.

Mark


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Bunnymom's picture
Bunnymom
Posts: 208
Joined: Apr 2014

thank you so much for your message. This pain and burning has worried me and has made me feel depressed.

I don't think I have thrush. I just saw the docs last week and they said nothing about Thrush.

I'm sorry you've had to deal with this too but I'm also happy to find someone else who can relate to what I'm going through. What did your doctors tell you was the cause of your burning and pain?

The docs say it's a rad chemo injury. Or, it could be a nerve issue. I also have one spot that hurts and my tongue burns. There's nothing there, a little red but just hurts. 

How do you know the nerve in your tongue is dying? Was this diagnosed somehow? I can't stand it. I just need some relief. 

Please let me know..

MGC
Posts: 62
Joined: May 2010



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The pain in your tongue was likely caused by radiation and not chemo. And like I said it was on and off for about 4 of the last five years for me. During radiation I wore a custom made mouth guard because I had 4 gold crowns (Since removed and replaced with zirconium crowns). I suppose it is possible that some of the rads reflected and bounced around to cause a couple super sensitive spots on the tongue but I just do not know. (I read somewhere that it could happen) I also had just one spot bugging me for years. It finally quit for now about 6 months ago. Use the magic mouthwash and orabase if needed. It works.

I really would not be alarmed by this as it is a very very common side effect. For the first 3 years after treatment I saw the same team of doctors every 2 months and informed them of the tongue issues and they assured me it was pretty normal. They scoped me every single time.

The dying nerve thing is a little different. Supposedly only 20% experience the nerve to start dying off. It is called the Hypoglossal nerve. It controls movement of the tongue. Not the same nerves that control pain, taste, and feelings. Just muscle control. After getting a bad fungal infection I noticed I was having trouble with coordination of my tongue while chewing food. At the same time i noticed i was slurring my speech ever so slightly but certainly definitively. Naturally I was pretty panicked and so initially they did an MRI which was clear. A month later they knew what it was but had to rule out a brain tumor pushing on the nerve so they did a pet scan. It came back all clear. Also did a swallow study that revealed that the muscles on the primary side pretty much are shutting down because the signal from the brain is not reaching them. That’s the nerve dying. So I am hoping that it stabilizes here and does not get worse. Sorry to carry on but i hope this helps. You are very early on and things should work out but there will be some pain at times.

 


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Bunnymom's picture
Bunnymom
Posts: 208
Joined: Apr 2014

thank you so much for the reply. I also wore a custom mouth guard during radiation. The med Onc said my tongue would be worse without it. I also have some crowns near the area of pain and I have also read that the metal can cause radiation scatter although I have no confirmation. 

I've been worried about this but none of my doctors seem overly concerned. It's just that it's painful. My med Onc has me on acyclovir because he thinks this may possibly have a viral component. I think it's a lingual nerve injury.

My tongue has some red areas that have been there since treatment ended. The med Onc thinks this is a chronic complication from radiation /chemo. Chemo only because it sensitizes the radiation to be even more effective. The rad Onc says I'm "unusual" so I didn't get the sense that this was all that common. I really appreciate knowing from you, that your docs seem to think it IS common. I'm 7.5 months out and it's frustrating to be in pain. 

I'm so sorry about the nerve issue. I hope it stabilizes. I'm not sure what the treatment could be For this. Please keep me updated.

If you get a chance, please reply to my PM and thanks again.

Bunnymom's picture
Bunnymom
Posts: 208
Joined: Apr 2014

Mark, I read that the lingual nerve can be damaged by radiation and chemo. I don't know what, if any treatments are available for this. 

Hondo's picture
Hondo
Posts: 6643
Joined: Apr 2009

 

That is very interesting about the Hypoglossal nerve; I too suffer from pain and spasms in the tongue just under the jawbone. I had radiation twice to my head and neck; everything was going great till a few years ago when it all stopped working and nothing the doctors do can help it. So I just live with it the way it is but every now and then I get a sock or something through the tongue from the dead nerve. I am hoping and praying that it will grow back and start working again, but who knows it might be worse. Will need to leave it all in Gods hand

 

Tim Hondo

francma's picture
francma
Posts: 65
Joined: Jun 2011

Since July 2014 I have a deviated tongue that looks worse now. Had MRIs and barium swallow. NED, no stroke nor tumor. Late effects of radiation. Been to speech therapy. Not much else to do. Recently saw my rad onc and he is trying some med and vit E. Hopefully it an make some changes to the scar tissues. Inmobility of the tongue makes it difficult to eat and speak. 

Goyca
Posts: 220
Joined: Apr 2014

Bunnymom I'm glad tests show NED. I'll pray u'll find a solution soon for this pain.

 

Bunnymom's picture
Bunnymom
Posts: 208
Joined: Apr 2014

I hope so too.

Noellesmom
Posts: 1862
Joined: Aug 2010

My husband is five years post-diagnosis with late stage hypopharyngeal and base of tongue cancer.  The cancer is gone but the treatment lives on.  Jim sustained nerve damage with serious residual pain in his neck.  

He wears a fentanyl patch as well as taking gabapentin for nerve pain.

Hopefully, you will not need anything on a permanent basis but just wanted you to know there are options. 

 

 

 

 

 

 

pcnat
Posts: 1
Joined: Mar 2020

You could use palmitoylethanolamide (PEA), I've seen this work wonders for this sort of pain. 

Its general prescription only through a naturopath or integrative doctor. 

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