Radiation side effects with H&N cancer. When will they ever end?

I went to San Diego for my treatment (Nasopharyngeal carcinoma) but live in Oregon. I have an oncologist and ENT who see me routinely, test me regularly, and treat the aftermath of 40 treatments of radiation and 7 weeks of chemo. Both are very pro-active in my care. For this I am grateful. Dealing with the lingering effects of radiation has been a challenge for me.

Waiting for PET results and having terrible jaw spasms and pain in mandible area 9 months post brachytherapy. Jaw movement such as talking or eating triggers the shocks. Left cheek feels as though I had been biting it and very taut. Trying not to open jaw much. Had been expanding food I could eat but now reverting to liquids and smoothies. Right now no treatment, just lots of meds to help with pain, UCLA oncologist not helpful re: pain, focused on whether another cancer. Requires my own coordination.

I feel for you! Know where you are and how the oncologist are. Maybe check in with your ENT, oncology PA/head nurse and a physical therapist. Many of the oncologist live in a box and have tunnel vision. They do their thing you pay them and the contract is complete. < -- A little cold and dry, but this is how I was done. Acupuncture helped me with my lymphedema (my neck was as big as my head). Within 20 minutes it was half the size. They might be able to help with the jaw pain/feeling?! Careful with the pain meds... might be adding to the issue (side effect). You are in my prayers.

Hi @joannemulholland7. Welcome. You went a long way for care. My sister lives south of Bend and also travels for care, just usually not to the other end of the West Coast.
There is some good information on this and other discussions within the H&N Cancer group. If you have specific concerns feel free to start a new discussion and it usually doesn't take long for others to see what the concern is.
The lingering effects of radiation is a challenge for for most but someday you should have that day when you have forgotten about any issues, at least for that day, and then you know it is getting better with time.
When did you finish up with treatments?

Hello @jazzyjoy and welcome to H&N group. All I got for you is to try to exercise your mouth and neck as much as possible. Alive or Tylenol seem to help although there are some stronger muscle spasm prescription meds however they usually have unwanted side effects. I also chewed gum slowly and softly which seemed to help.
I am so glad my spasms subsided but it really took years, not months. Maybe keep a log to see if things are improving with time. If no improvement or things get worse, talk with your oncologist or see what your GP has for a solution.
I wish the docs would tell us what a tough ride this is although then we might not hop on, which would be worse. You get through this you can get through anything.

Thanks for your reply, it helps not to feel I am the only one taking this ride.

I have an obturator from the first cancer on the maxilla and can't chew anything. Then I had 2 mandible cancers treated by radiation. The spasms are on the mandible area and are triggered by my smoothies or talking or moving my jaw and they don't think it is trismus. I am taking several pain medications, methadone, carbamezapine, tylenol, but they aren't sufficient. Have just had another PET SCAN but no result yet. The problem I have been told is that no treatment is not a good option because it so painful. So many head and neck cancer variations, really appreciate your offering help.

I finished a 28 treatment radiation course in September. I had cancer of the vocal cords. For the first two weeks after treatment, I suffered severe pain in my throat and an inability to speak. Slowly, however, this has improved. I still have a sore throat, but I am able to solid food now. I have an awful cough, and it feels like there is something stuck in my throat, but each day it seems to get better. My voice is also getting stronger.

It’s not fun, but I feel I can see the light at the end of the tunnel. I stay active and just started back to work. We can get through this!

Hi Mr. y William Olsen
Please find my attached Panoramic Oral Xray and CT scan I just told you about in my message.
Thank for all the help and advice.

My sister, 68, had squamous cell carcinoma, stage 4 on the left side of her tongue.
She had the 8 hour surgery to remove 1/3 of her tongue.
Prior to the surgery (while in the operating room) they removed 5 teeth on her left side.
To rebuild her tongue, they took the skin , tendons blood vessels etc. from her left forearm to rebuild her tongue.
All of the above were so incredibly hard to heal from, from the ng tube, the loss of taste, saliva, difficulty swallowing, and eventually trying to eat. she lost 30 lbs. and has a hard time keeping her weight up.
After her 7 weeks of Radiation to her tongue area, the oral nightmare will never end.
Most of her bottom teeth fell out; she had 4 left that needed to be pulled.
The oral surgeon could not pull them until she completed hyperbaric chamber treatments to help strengthen her bone, so he could extract them, and the plan was to fit her with a permanent partial bridge on the bottom. He says he can place it and hook it to 2 of her existing bottom teeth., After 10 more hyperbaric chamber treatments.
So the nightmare continues. And, not to mention the tooth abcesses,, etc.

It is very difficult to find any information regarding any way to help head and neck cancer patients with any viable solution to help with replacing teeth, stopping them from rotting, and all of the other horrible post radiation treatment issues with their oral health destruction.

And, the COST of it all. All of the dental visits, tooth extractions, oral surgeries, medical visits
mostly caused by oral health and due to radiation, are NOT COVERED UNDER MEDICAL!
Dental insurance does not cover very much.
Any thoughts about this? Anyone had any good treatment and good news about saving your teeth? Or any good advice on who to go to for excellent dental, oral treatment that has been life changing for your recovery? Would love to hear some advice. Thank you!

Hi @bsn69 What your sister has and is going through is a rough time for certain. And I agree with the argument that dental should be included in the health insurance costs when it is incidental (no pun intended) to the cancer and/or surgery. One of these days we need to revolt against the insurance companies on that issue. I personally have paid out of pocket close to $50K for "dental" because of cancer.
Advice to sister is to heal first, then fix what is broken. Healing from this ordeal takes far longer than anyone might think.
I have not much faith in hyperbolic treatments as the science is not very conclusive on the help it may do for the patient.
One day at a time and I pray her days will get better. You are a good sister.