Odd side effect? My tongue is killin me...

Anne5678 said:

tongue pain
I also had excruciating tongue pain. Made swallowing anything, even pain meds, pretty tough. They gave me morphine (I didn't have to swallow it, I could let it absorb through my cheek). Also, I used that "miracle mouthwash" with lidocaine in it for each meal. It numbed my mouth enough to get something down. My pain really kicked in about 2 1/2 weeks into radiation treatments (and the chemo knocked out all taste the first week, which didn't help), but then the pain kind of subsided until week 5-7 (when it got really bad again). I did not have a feeding tube, but in hind site, with the tongue pain, wish I'd had one! It got very difficult to swallow the last few weeks of treatment and the 2 weeks following completion. I would've loved a feeding tube at that point, and could have still worked on swallowing. My doctors, however, thought I was doing "great" and advised against it (though I did go in for daily fluids at the end, as I just couldn't swallow enough to stay hydrated).
I also had really bad mucositis (which cleared about 2 weeks after treatments). It's a pretty miserable treatment, but just take each day one at a time. Before you know it, it's done.
Hang in there. I'm now almost 3 months post treatments, and doing really well. Clear PET CT, back to work, jogging again, etc. Life gets much better!
You can do this!

Tongue pain
Yes, I had severe tongue pain. My tongue was probably one of the worst things for me during treatment. I could barley speak because the pain was so bad. I'm two years past rads and my tongue feels scalded. It still feels like I just burned my tongue on some kind of wicked hot beverage. At least its down to about a 2 on a 1-10 pain scale now, and I can eat, and people can understand me when I speak.

adventurebob said:

Tongue
Brian,
The tongue pain was the main reason I needed to use the PEG. Any texture passing over it hurt like hell. It is possible that your tongue is getting burned from contact with your teeth in which case your mouthguard needs to be adjusted. Have the rad techs look at where it hurts and see if those are spots left exposed after you put the guard in. If so; it should be easy enough to have a new guard made. Otherwise, liquid lidocaine swishes and pain meds are the ticket. I found that it didn't get better until I quit trying to eat and stopped aggravating it. Once I shifted over to the PEG completely it began healing.

Bob

I didn't have any kind of mouth guard. No one ever said a word about that.

Tongue Issue
Have heard the mouthguard thing talked about before, but I did not get or know of until the mention on this forum. Can't comment on any advantages, or whether or not it would actually lessen the purpose of the rads.

Brian, your tongue issue is common. I'm NPC, unknown Primary, so the mouth and nasal/sinus area took a hit, and they flooded me with Cisplatin/FU-5 at an accelerated delivery, which I say to explain why my mouth went south earlier than most others. When I talk about "scalding" of the tongue, I am talking about actual flesh-colored stripes that could easily be seen. They ran lengthways down my tongue, and there were numerous of them. My Chemo Dr. took one look into my mouth at the start of week #2, and said, "Scalding." She then put me on the Morph that day, along with prescribing the Magic M, which I should've already had.

That said, there isn't much else I was able to do for the tongue, except MM and the Morph, and avoid that which would aggravate the condition. Ice was a blessing, as was the PEG. The open sores that developed are another matter. All I remember using was the MM and another swirl and spit liquid that was more for antibiotic purposes (I think). And, of course, the Morph. I did get "Hurricane" ointment for a particularly bad mouth sore, but it only helped for an hour, or so, and it was not for the tongue.

The good thing, Brian, is that the mouth and tongue issues being extremely bad only lasted during treatment for me, and by a couple weeks post-treatment was able to stop the PEG useage, and start with pancakes to go with the Ensure. The tongue and mouth issues are part of what makes H&N the second-harshest of C treatments. And it did amaze me by how fast the mouth healed, post-treatment, and I hope and Pray the same for you. I know others had their really rough conditions last longer than mine did, but we are all C-specific different. By 4-months, post-treatment, I was eating Brats w/mustard, relish and onions, and by 8-months Roadhouse Chili became a favorite for lunch. Hope you will get there, too.

Believe

kcass

sweetblood22 said:

I didn't have any kind of mouth guard. No one ever said a word about that.

Dark Ages
Sometimes I realize we still live in the dark ages. With all the information sharing available today our docs still can't share a simple piece of information like mouthguards. Maybe we need to include a mouthguard in the H&N kits?

Bob

Tongue pain
Buzz had severe tongue pain and sensitivity early in his radiation treatment. His tongue looked like he had been licking a cherry popsicle (it was bright red). Keep up with the baking soda rinses. Magic mouthwash will help numb the tongue so you can try to eat. It will be difficult but you can do it. Don't be afraid to ask for help with pain management. You don't need to suffer needlessly. Karen