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

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.

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.

this is so helpful!! i wish my husband's team had given us this info! i had no idea. thank you

I noticed that I started reaching for a Kleenex every time I sat down to a meal. Never thought anything about it. Never occurred to me that it could be from my radiation treatment for tongue cancer.
I may have to rethink some of the other oddities in my life since the treatments ended.

Radiation side effects with H&N cancer. When will they ever end? Part II:
Members have reminded me of a couple of issues which I had forgotten about but actually still cannot ignore so I will include them here today. I live with these (6,7, and 8) and don't even think about it.
5) Neck/Throat Pain from a sneeze, severe enough to cause tears in the eyes. This lasted about 10 years. When I felt a sneeze coming on, it was terror. Now I actually enjoy a good sneeze.
6) Nose "Runs" when eating. This is probably a saliva re-route after radiation turned my mouth into raw hamburger. This continues to this day but has been improving over the past two years. Must always eat with a napkin to dab my nose. This can be done discreetly however.
7) Thyroid Bruised. The radiotherapy I had was Photon so as a result my thyroid was bruised. The thyroid went low about six weeks after treatment ended and suddenly too. Then it went high. A scan showed one enlarged wing (there are four like a butterfly). Twenty plus years out I continue to take a very small amount of medicine to reduce the thyroid output so I don't get jittery and have a shortness of breath. I can live without the medicine but with it life is easier. To have the thyroid ablated I would be totally dependent on thyroid replacement medicine. I take Methimazole 5mg twice per week, a very minimal amount.
8) Food Pockets. I once had a nice oral cavity the way God intended, but after radiation bombardment I was left with ridges and scarring. Within these folds and pockets food particles like to hide. Spices are the worst but it all needs to be delt with after eating. It improved within a year or so after treatment but never back to original so for that reason I brush after every meal regardless where I am and I travel with a water pick just in case it is necessary to use it. Often a good water swish will suffice. Oral care has been a top priority since early recovery.
9) Loss of specific memories. Radiation about four or five weeks in literally blew the hair off the back of my head in a very finite line. I have no doubt the brain took a bit of a hit as well. I had a photo and am still searching for that. Anyway I lost specific memories about people, places, math formulas, foreign languages, etc. One does not know what one does not know and that can be scary. When you don't recognize an old friend or swear you have never been to a certain town yet know exactly where the hardware store is, that can throw you off a bit.
More to follow. I appreciate the other members who have inputted their thoughts and comments. All any of us have been through has just been a difficult but not impossible road. I wish all of you could end up enjoying a new normal and I know many of you have. Time heals all wounds, even cancer.

Hi there, I’m a 74 year old woman who was in fairly good health until I had radiation therapy for 5 days/week for 7 weeks following surgical removal of a small malignant tumor on my larynx 7 1/2 years ago. What prompted me to see an Otolaryngologist was that I’d lost my voice. Could only talk in a whisper. Apart from that, no other symptoms. Toward end of treatment I was beginning to really feel the fatigue, which got worse after treatment ended. I was warned about this by my doctor. My voice started to come back but within about 6 months I developed severe pain on the left side of my throat that radiated up to my ear. The doc that did the surgery sent me to a Laryngeal specialist at Mass Eye and Ear in Boston. His immediate diagnosis was a bad infection. He put me on a very aggressive course of antibiotics and anti fungals for 30 days. This led to severe GI problems, which persist and have worsened over these past 7 years. I now have a diagnosis of gastroparesis, slow gastric emptying, which means I can’t be far from a bathroom for most of the day. It causes me a lot of severe and nearly constant stomach discomfort.
My fatigue has increased since the RT and between that and the GI problems, my quality of life is really diminished.
The only thing that resolved after RT were the burns on my neck.
I still have problems with not enough saliva and my teeth have gotten worse, for sure.
My fatigue makes me feel depressed at times and that makes me anxious and less inclined to do anything or go anywhere.
Really upset about these cascading health issues.

You are a GOD sent I have just been diagnosed with this same cancer in the same location and waiting for the date I start my radiation treatment. I am 68 and feel great and in good shape so GOD willing it will go well
Thank you and I’ll be reading more of your experiences .

My problems were due to malfunctioning equipment. On one or two occasions, machines were not in use. I probably got zapped before they discovered the problem.

The effects of radiation will continue for the life of the patient. In my case, they got to the point that I can’t eat food like a normal person of my age, which is mid-60s. I have to take antibiotics to mitigate the risk of osteoradionecrosis and I believe this is also why I stopped getting aspiration pneumonia.

The xerostomia never gets better and the trismus (lockjaw) also gets progressively worse. A new patient can probably mitigate trismus just by forcing their mouths open as physical therapy. I wish I had done this because now my teeth are in terrible shape and I can’t get dental work done because my mouth will not open more than a centimeter or so.

An old ENT doctor told me that in the early days of radiation therapy they would remove a patient’s teeth before starting radiation on the head-and-neck area. I was supposed to put fluoride on my teeth at bedtime for my entire life, but I was a teenager and didn’t think I would survive very long anyway, so I blew it off. Eventually I lost most of my teeth.

Another thing that I was not warned about is the risk of severe nosebleed. Doctors call it epistaxis. I had a completely unexpected nosebleed that put me in the hospital for nearly a week. The emergency room treatment for this kind of epistaxis is a form of torture that involves shoving something like a condom into the nostril and filling it with water. It was possibly the worst pain I have ever experienced and that includes a radical neck dissection. The pain was so bad that I kind of went into shock and thought incorrectly that I had gotten a shot of morphine or Demerol. But anyway, be careful about taking aspirin if you are using nasal steroids.

so sorry to hear about this and so glad you have finally reached a stage of less aggravation. i know this is not the same thing anywhere what you had as i have the aggressive papillary carcinoma. probably not on the right page, but, since you have been through alot it sounds like you might just be able to answer my question. i am going to have the radioactive iodine pill on may 8th of 2023. i just started to research and do not like what i am reading and the truth is, i didn't expect thyroid sugery to be as hard as it was. still suffering from the january 31, one on the right side, radical dissection. i still feel like i have the thick dog collar around my neck, swallowing is still hard. the whole right side of my body hurts no matter what i do. my main question was though: i am told i will only be at the hospital for 2 hours, have to suck on lemon candies to help the salivary glands. i just wonder what the real outcome is going to be as they said thyroid surgery, i would be fine. well, i'm not. thank you again for letting me vent. i can't wait till you post more about your radiation side effects. god bless