Sore tongue doesn't begin to say it.

So sorry to hear about your tongue pain. That happened to my husband as well. One thing that gave him a tiny bit of relief was a numbing liquid that his doctor gave him. He put it on a Q-tip and put it directly on  his tongue. Mostly though, he quit eating and got a PEG tube so he wouldn't lose any more weight. The PEG tube isn't fun but it saved him because, like you, the pain on his tongue was excruciating.

He is so much better now - 40 days post radiation and ready to have the tube removed - tongue sores lasted until 10 days after the last radiaiton treatment.

Good luck!

Revbyrd, sorry you are going through this but you've got a lot of support this site.   I had the same thing as you, started in my tonsil and multiple lymp nodes affected.    the first time I had Thrush my tongue hurt so bad I thought it was going to kill me and I didn't know what it was.  I'm not sure how long you've been on the medicine for the Thrush but after a few days the thrush part should get better and mine still hurt w/o Thrush but when I had thrush it was 10x worse.   The magic mouthwash helped me but it took a few days.  I also the the thrush lozenge the radiation oncologist prescribed as well. 

You should also consider getting a Peg tube as you can eat, take your meds, and more importantly, stay hydrated.   I know you're almost finished with treatments but it will help in the weeks post treatment as you start to heal.   You'll probably be really sore for several weeks following treatment and the first couple of weeks will most likely be some of the toughest times you will face.   

sipping constantly on water seems to help some as it least it stays moist, which seems to be less painful than dry.  

Good luck and I hope the thrush gets under control quickly,

keith

As others mentioned, it looks like in your case it is very important to get a gastric tube (PEG) inserted a.s.a.p. Not fun, but totally doable and could be lifesaving. Have you been presented with this option before you even started the treatment? Please keep in mind that the (mouth) condition will continue to deteriorate, the worst will probably be around the time you finish the radiation and even 1-2 weeks after. Then it will slowly (but surely) improve. Others went through this without tube, but again, it seems you need it.

Tube or not, you still have (at least) to keep hydrated and keep swallowing.

(Mouth) thrush can also be treated; doesn’t mean you’ll get rid of the pain, but it improves your condition.

NUTRITION - HYDRATION - PAIN MANAGEMENT

Simple to understand, not so easy to check off.

You don't mention what is happening with meds. You need narcos at this point to get the pain under control. Then you can eat and drink easier.

hydrocondone, oxy condone, morphine will help with the pain. 420 CBD heavy can help too. Orally, liquid lidocaine and magic mouthwash, baking soda/salt solution will give you relief for enough time to get some food and liquid down.

Of all, you HAVE to get fluids in ASAP!  If you don't manage, get saline via IV now. Dehydration is not something to mess with.

There are many pro PEGgers here but also some who prefer to hold off as something as a last resort. Many have struggled through without needing one.

Get this addressed first thing in the morning. The pain and hydration issues need to get attention now.

good luck, don

revbyrd,

Welcome to the H&N forum, at my last count it was 7 for a PEG and 2 against a PEG.  I say (the obvious) you either get the calories by mouth or you invest in a PEG.  I had 2 PEGs so I am no stranger to them.

As for mouth & tongue & throat discomfort I had great success with Magic Mouth Wash, it was a potent vintage.  If your MM is weak ask for a stronger concoction (there is a variety of strengths).  I also had the liquid Lidocaine for direct application.  Additionally, I swished and spit soda/salt mixture all day long and managed to drink lots of water.  Never had Thrush so I’ll leave solutions for that to others.

You do have an ace up your sleeve, you have cats & dogs to cuddle with, virtually no medicine can compete with that.

You have still got a few visits before you can rest, hand in there and be as tough as you can be.  Keep your team informed of your status and good luck with the nutrition, hydration and discomfort.

Matt

revbyrd said:

 
 
I am planning on

 

 

I am planning on insisting to talk with the doc on Monday.  

Actually, I don't have  a very good track record with talking to doctors.  I started having a sore throat 8 years ago and I complained to every single doctor I saw.  None of them even looked in my throat.  This last summer I kept on dreaming I was choking and when I woke up - I was!  So I finally called a specialist on my own and that's when they found the cancer,  golf-ball sized in my throat.  Stage 4 by the time I caught it.  I admit I am somewhat ticked at the doctors who couldn't even be bothered to look at my throat.  Maybe it would have been caught much sooner.

Ah, well, at least I had the good sense to call the doc on my own.

 

-revbyrd

American Cancer Association for rides.  They have volunteers who will provide transportation to and from treatments (at least they had them here, and this is a very small town in NW Montana). 

Don't fight the feeding tube idea too hard....the sooner it's put in, the better you will feel....getting one glass of water down a day ain't enough (more like 64 ozs per day or more).....and you need a ton of calories to keep your body going.  You don't want to have to spend your days hooked up to a TPN trying to get the nurtrition and hydration you need, when a tube is SO much easier. 

I don't know what type of Boost you're drinking, but there is one called Boost VHC....it has 540 calories in it, instead of 360....every calorie counts! 

p

revbyrd said:

Saw the doc today.  He gave

Saw the doc today.  He gave me two prescriptions to see if we can get the tongue better.  I honestly think I could eat if the tongue did not hurt so much.  Also, no rads for three days.  Still have to go in for IV hyration and a CT scan.

 

when I came home I tried some broth, heated up a little.  And I could swallow it!  The heat actually feels good.  I got almost 3/4 of a cup down.  And I will take in more later tonight.

I am very tired and need to nap.

 

 

Great news on the IV saline and the broth. That is huge. You keep pushing liquids down the gullet! Once you feel OK with the thin stuff, try to mix up a diluted solution with whey protein powder. Experiment with various thickness and various liquids. As warm seems good, try warm water first. If you do better with less thin fluids, some do, then try warm mile. Or cold or whatever. If you can get sufficient liquid and nutrition orally, that is the best way for certain. If you are at risk of not being able to maintain minimal weight then the PEG is your friend.

Don

My husband had the same problem, refused to take the tube feeding even though he had a peg tube.  He lost 70 pounds during the course of his treatments.  Eventually he began taking the tube feeding because he was starving, and it kept him alive.  He wanted to eat he just couldn't.  He stayed so hungry when he slept he used his hands and moved them to his mouth as if taking a bite of food and then he went through the chewing motion.  That's hungry.  I'm so sorry you're going throughh this.  He was in agony with the pain in his mouth, sores, thrush, blisters, no taste, couldn't eat, burned up.  When he didn't get the fluids in him his blood pressure dropped, he dehydrated, and had to have ivs for hydration.  I know it's hard, but food through the tube was the best answer and kept him alive.  God be with you and lessen your pain and agony.