Hello, my name is Cliff I had Tongue cancer two years ago and they had to remove 1/3 of my tongue followed up with 120 lnympenodes removed all of which were clear( this the great news) I then went through 6 weeks of radiation . The cutting and then the radiation has left my tongue feeling like it is so very burnt still that it is hard to eat and at time talk due to the lack of saliva , has anyone else had the issue and if so do you have an answer where i could get help.

Have you spoken to your doctors about this problem? Two years sounds like a very long time for you to be still feeling like this. I have no experience with tongue cancer, my husband had oropharyngeal cancer and he had 7 weeks of radiation. That was enough to give him dry mouth. He carried a water bottle around and rinsed his mouth whenever he could. That’s a very basic way to deal with it but it worked well for him. Over time, it appeared to me that the dry mouth improved a bit. I hope that is going to be the case for you. But I would really want to let the doctors know/have a discussion with the doctors if I were in your shoes.

Welcome to OCF, Cliff! You have found a great resource made up of oral cancer patients/survivors and caregivers who share their experiences with each other. We all understand what you are going thru.

A complete recovery takes most of us 2 years after finishing rads. Some members over the years have reported noticeable improvements with their saliva past the 2 year post rads mark. Hopefully you will be one of the members who took a little longer to complete your full recovery.

Im very sorry to read about your long term after treatment problems with saliva and your tongue feeling burnt. You are not alone!!! A great many oral cancer (OC) patients/survivors have ongoing health problems, some arent noticeable while others can be life changing problems. Its 12 years since my original date of diagnosis and I still struggle with some issues that many other long term survivors dont mention. The lack of saliva for most OC patients stabilizes before patients hit their 2nd year mark of finishing their cancer treatments. Almost everyone notices they now produce less saliva but almost all have greatly improved since they first finished their rads. This can also have an impact on why your tongue is feeling like it is.

Many who suffer from lacking enough saliva have found help with chewing gum or hard candy that contains xylitol. Theres a newer mouth rinse on the market that some have mentioned as helping with their low saliva production. You may also find some help with taking a prescription medicine called pilocarpine. Sleeping with a humidifier may help as
Others have found some over the counter lozenges that sticks to the roof of the mouth as it slowly dissolves (helps overnight). Yesterday in the pharmacy I noticed the small tablet thats stuck to the top of a patients mouth was in both brand name and generic of the chain drug store I was shopping in. I figured seeing it as a generic means it must be a big seller. The only other thing I can advise is to take impeccable care of your mouth by brushing and flossing after every meal, using a tongue scraper and using a water pik (on its lower settings) 2x a day (with warm water and some non-alcohol mouthwash) to get anything missed. Also swishing a combo of one cup warm water, 1 tsp baking soda and 1 tsp salt for about a minute 3x a day should help your mouth retain the right Ph balance which could help make your tongue feel batter. If you havent already discussed this with your doctors you probably should. They may have something else thats new to help with this. Some OC patients have tried acupuncture with mixed results reported.

I know it doesnt help but you are NOT alone with this. Having dry mouth is something almost all oral cancer patients who underwent radiation treatments struggle with for months after rads, some struggle for years. This is known around here by us old-timers as joining the water bottle carrying club.

Best wishes with your continued improvements!