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

Oh so many of the symptoms. After what seemed like an eternity, actually twelve months, they finally discovered I had a very aggressive squamous Cell Carcinoma radiating down from under my right jawline. The little sucker used my Tri-Geminal nerve as a very nice conductor. The pain apart from being weird, caused no end of pain. It is unsure if the Tumour or the radiation did the damage, but the Myeloid coating on the nerve has gone. I had what the technician called "The heaviest Radiation Dose he had ever dispensed"

I am left with lifelong pain as the coating won't recover, also the scaring on my larynx and constant problems with Infection and Fungal growths. I am presently on a new form of anti-fungal which seems to be improving the problem. The other is opposite to most of you. I have excessive saliva and a constant problem with Mucus.
The Mucus is so bad it forms and at times almost blocks my airway, which creates a huge coughing fit which aggravates my whole larynx and so the problem goes on.

This is now my 3rd year after Radiation and Chemo and each year a biopsy has been done as the ENT Docs believe my Larynx has gone rogue and needs to come out. Both the earlier times I have refused saying life is about quality not quantity and I will go with all the nasty bits still in. In all earlier tests it came back as negative for a tumour anyway. This year to be sure they have ordered a second biopsy as they expect to find the cancer with or without my help.

Between my constant cough and the ongoing extreme pain along with the excessive use of Kleenex now my complete loss of voice from all the above Life doesn't seem to hold any form of quality and it is just one ongoing trip to the doctor for no energy, pain management or referral for more pain killers. It is my firm hope the rest of you do not get into my situation.. Wishing all a speedy successful recovery.

I also had the hair on the back of my neck come off in a straight line. My wife asked me if I had cut it with clippers. My radiologist explained to me after I asked that the radiation went in. 360 arc around my head.

Just a point that should be included on effects, teeth. Prior to my radiation I was told to get my teeth checked and any repairs needed to be done there and then. An accompanying letter was supplied for the dentist's to refer to.

I had this done with a clean and two fillings. Seems simple, I was happy to get that bit out of the way and get on with my treatment. Now three and bit years on, I realise what they were talking about. All my bottom teeth have gone to God. If they haven't fallen out, they are broken stubs of their former selves. I have had, must be around 14 dental visits now and am finally getting back to getting the end product of radiation a full bottom plate.

Not one Dentists would remove any of the damaged teeth. It was their supposition that removal could cause a break in the Jaw! Chewing food is a nightmare, but getting food in is nearly as bad. My incisor teeth are mere broken stubs. Wow for anyone who doesn't have them they know that biting food off is impossible, so it is cut everything up to the smallest bit possible before it gets into the mouth.

Now meals are a long drawn out process that is generally not finished anyway. Your weight needs to be monitored as in my case, I have lost 3 kilograms in the past two months. All good if i needed to, but I had already lost 30 kilograms after treatment and chemo. So be warned, try and save the teeth.

@ntodd, your symptoms could describe most of us that went through radiation for head and neck cancer. If you desire to go on my profile, you will see a detailed history of the symptoms and outcome I experienced...and still do. Ultimately, approximately two years ago I was given a tracheotomy. This has been a Godsend for getting that nasty mucus out. It is now accessible! I know that the thought of having a Trach-tube is nauseating, but it is a huge relief compared to the trapped mucus. Most days, I hardly notice it is there. Yet, the ongoing lung infections from trapped mucus have been alleviated. Best wishes to you.

For the past several weeks since I started radiation and chemo treatment.and recently finishing A Galliume treatment, I’ve had an intense swnsation to anything even relatively cold in my mouth. It’s like the pain shoots through my molars and through my jabones. anyone else deal with this? What did you do? My dentist yesterday sold me Sensodyne. That seems like treating the symptoms but what about the cause??

@brianhavefaith, please research "red light therapy." I believe this light to be very, very healing in many conditions. Utilizing the light consistently may help alleviate your issue. My thoughts are with you.

Radiation side effects with H&N cancer. When will they ever end? Part III final:
To finish off the list of side effects I experience(d) after radiotherapy we start with an easy one.
10) Sparse or limited beard on the left side of my face and neck. This is on-going. It is not a big deal and cuts down on my morning routine time but if I should wish to grow a beard, well that's not a sight anyone should see.
11) Difficulty swallowing > 1000mg meds and certain foods. Breads, white rice, white meat poultry and anything dry does not work in my throat so is either avoided or modified with liquids. After years of testing, I know what works and what doesn't and it becomes a way of life.
12) Osteoradionecrosis of the left mandible (death of the jaw bone). This required surgery which was done at Mayo , Rochester. All is very okay now. Thanks to Dr. Ettinger and crew. This is a story in itself but was probably the most difficult of all the post issues to deal with.
13) Cancer Free! The only good side effect from radiation treatment is I never had a re-occurrence of the initial cancer.
While some or all of these side effects were going on over the past twenty-some years I did not sit and wallow. I continued with life and made whatever accommodations were necessary to move on. I fought with the Federal Aviation Administration to maintain my pilot's medical requirement. My occupation as a traveling engineer (field engineer) continued with work all around the world. My family life continued. The lawn got mowed. The kid went to university. Despite setbacks and issues to deal with, I was still looking at the grass from the green side. We learn to cope and we continue with life. As the song says, " If you have the choice to sit it out or dance, I hope you dance".

I think you will see that those pains will subside, or at least I hope they will. This is one of those issues that cannot be explained to someone who hasn't had the experience.
As for the fatigue, your primary care physician can order up thyroid T3, T4 TSH blood tests easily along with perhaps other enzyme tests to possibly help get a grip on the cause of fatigue. radiation can damage the thyroid, which is located in the front base of the neck. It is not uncommon to want to sleep 9-10 hours per night during recovery but simple tests can put your mind at ease.

Grateful the cancer never returned but what a horrible journey you had to endure to get here. As someone said, "What doesn't kill you makes you stronger." You no doubt have a wealth of advice for those just starting out. Thumbs up to you.

Teeth issues are the worst to deal with. Mayo should be able to help you with the osteoradionecrosis and rebuild of your teeth and jaw if you are interested.
I took antibiotics for years although it does nothing to stop the bone death as I understand. Only to help with the constant infections around the tooth root.
It sounds like you have had a rough journey. Are you getting issues under control such as eating and getting on with life?