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While I can’t share any insight as to the head burning issue, I can share that pain I had in my jaws did eventually get a lot better with time. a few weeks after ending treatment, I had to start forcing my mouth to open wide several times a day… every day. My goal was to stretch to fit the width of three fingers side by side. Then, one day I just yawned unexpectedly.. and my mouth opened really wide all by itself. Was a great day! Chewing anything for a long period of time was also painful… that also went away for the most part. It took a few (maybe like 4-5 for me). While I am sure your situation will improve as mine did.. with time, you may want to check with your oncologist / ENT to make sure.

Hello, Henry and welcome to the CSN H&N discussion group.

Praise God you are cured and you are because of the treatment regimen you endured.

I would say most or all of the things you describe are from the treatments and the leftover effects of radiation and chemo.

Probably from nerves that were affected and if you had the normal amounts of radiation that H&N patients usually receive you probably had to deal with very reddened skin in the radiation area like a bad sunburn.

As you say it goes away and comes back but it will most likely stop sooner or later.

Some of these effects we deal with can take a year or more to work out.

I still remember my Radiation nurse telling me very seriously that till I got through this it would take a year of my life.

Some of this will take time to work out or see where you end up with all of it.

Recovery progress from H&N cancer is measured in weeks and months it is a process that requires patience and reaching out to your care team to address any problems you may have, believe me, they want to know and want to help.

Your effects are mostly from radiation but could be chemo also if you had it.

It will be some time till you see how much saliva you get back and everyone is different. I would estimate I got forty to fifty percent of my saliva back, some people get much more some even less. My best wishes are with you in this respect.

When you eat you will need to sip some liquid, for now, to make up for the missing saliva that the radiation has affected. Try taking smaller bites for now mixing with liquid in small amounts so you don’t detract from the food so much. Radiation damages our saliva glands and the flow is less and it will be a period of time till you see how much your saliva glands recover.

I also have to chew my food much more but that is also due to the need to make it smaller to be able to swallow it since the radiation has made my throat smaller. It could be that radiation has affected your throat. Check with your ENT or your care team or a Gastro doctor.

After radiation, I started getting things stuck while swallowing.

I had 4 dilations of the throat where they stretch your throat a little bit at a time and it cannot be done all at once because there is a risk of tearing the esophagus and after radiation tissue is less flexible.

This may be something to consider, ask your care team.

Your jaw may hurt or be sore from more chewing and or an effect from the radiation. Can you open your mouth as wide as you used to or is it diminished? You may have trismus from the radiation. Which affects how wide you can open your mouth and may be causing you pain.

Trismus

​​Trismus is a disorder in which it becomes difficult, painful, or impossible to fully open your mouth due to a decrease in the range of motion of the muscles or joints of the jaw. It is one of many possible long-term side effects of treatment for head and neck cancer. Trismus is diagnosed by measuring how wide the mouth opens or by the degree of pain with attempted mouth opening.

The link below covering this subject from Head and Neck .org--

Check with your care team, you should be seeing a Speech Therapist which helps you with all things Head & Neck, swallowing, speech, mouth opening, breathing, and anything to do with that area. They will monitor your swallowing, saliva, sore jaw, and other things while you recover from this and will give you swallowing exercises, jaw exercises, and maybe even have you get a swallow test so they can see what is exactly going on in your case. It will help you greatly. It has helped me very much. There are a couple of links below one for swallowing and speech rehab for us H&N patients and one covering a swallow test. Please get on top of these problems, trust me there is room for improvement working through your care team and getting the right assistance.

Going forward Wishing You the Best.

Take Care God Bless-Russ

Eating normal meals with family/friends can be a challenge. Before sitting down to eat, I usually blend up a smoothie with almond milk, olive oil/avocado, some nuts and fruit, and drink that down before the actual meal. That way, I can get by with smaller portions of the real meal.. but, still sit and enjoy the same foods everyone else is eating, and enjoy the company at the table. Even with cutting food into much smaller pieces, and having smaller portions overall... I still manage to be the last one to finish said meal. Just have to get used to eating while everyone else around the table is staring at empty plates in front of them. Also, every time I swallow something solid... wondering whether, or not, this is going to be the mouthful that gets lodged in my throat can add some excitement to the meal. Every once and a while.. I will push it, get close to it getting stuck.. and go back to cutting things up really small. It just becomes the it-is-what-it-is situation... and I just appreciate being there in the moment.

First off, I am just sharing what I did.. without any actual study or doctor advice to back it up. I think one of the best things we can do post treatment is start to build muscle by incorporating weights and strength training with regular exercise. Muscle weighs more than fat... and, I think we lose more muscle than we realize when we go through this treatment/post-treatment process from all of the laying around. I was in really good shape prior to surgery.. and lost approx. 30 lbs total after all said and done. I have several kettle bells (20 lbs up to 35 lbs). Before this all started, I was walking regularly with the 35 lb weight and building muscle. After a break from this that lasted post-surgery to 5-6 weeks post treatment... I decided to get it going again. I had to start back at the 20 lb weight, and that was tough. When you can build muscle, your weight will increase, and your body will crave more calories and carbs. At that point, you can consume more and more carbs with the fats, because they will get converted to energy vs the negative side-effects. It seemed like the more strength I gained, the more permanent was the weight gain. I started playing tennis again. My arms and shoulders got stronger, my hands and forearms got stronger, my legs gained some muscle, and even some of my MIA, flat butt started to come back.