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

After receiving a full course of radiotherapy for squamous cell carcinoma to the left tonsil area, lingering side effects had to be faced. My very professional oncologist said I should snap back in a month or three however I was his first for an upper throat radiation. Aside from the normal expected side effects during and shortly after radiotherapy, some side effects can last for years.

Head and neck radiotherapy is unique in the fact that vital life areas are being attacked with radiation. The mouth, sinus, gums, salivary system, esophagus, airways, swallowing, vocal chords are all effected. It isn’t like we can stop breathing or swallowing to allow us time to heal. Other areas are usually less complicated.

Because the recovery years are hopefully behind me, I thought I would share with anyone interested and dealing with side effects and assure you that with time things usually get better. I will begin with four side effects and add a few over the next few weeks. This is not to say it is a complete list or that you have or may expect any or all of these side effects. We are all different in our treatments and recoveries.

Don’t be alarmed. I am in my sixties now, in very good health, and enjoying life.

1) Dry mouth. Probably the most common and bothersome. I keep water with me always and at my bedside. Mints help as well. This has improved over the last ten years but I wouldn’t win a spitting contest.
2) Nerve issues on the face and neck. Known as “creepy crawlies” or “bugs on the face” the feeling that something is there although that clearly is not the case. Sometimes rubbing the face or drinking cold water helped. This occurred initially several times per day but after a few years it became infrequent and lasted roughly seven years.
3) Nerve shocks on the left arm and shoulder or sometimes just a dull pain of the upper arm. The shocks would startle me and those around me I’ve been told. Lasted about five years.
4) Neck cramps. Some call this “lock jaw” but it is not the actual tetanus disease and only lasts for usually less than a minute. Mine was often initiated by yawning, a sneeze, a cough, and on occasion eating or talking. Rubbing the area helped and indeed it often felt like a cramped muscle in the neck. Unfortunately this stayed with me for roughly fifteen years.

More next week. If you have any questions or comments or wish to add I would welcome that input. Until then please know time heals all wounds as they say.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Profile picture for lummy @lummy

@taylorma
I’m 7 1/2 years out from H&N tonsil cancer. I had surgery, radiation and chemo. I believe I may be having silent aspiration. I am going to have another swallow study to learn more.
I may be heading for a feeding tube. Any advice.

Jump to this post

@lummy I had a tough time adjusting to this, my advice get a good nutritionist, also how well you digest your food, I also digest my food slow. so doing most of my feed at night. That works best for me. The main thing is finding the right balance so you don’t feel like you are hooked up to a machine all day. Your nutritionist will be able to give you good advice.

REPLY

I’m having neuropathic itch on my neck were i had radiation and my right ear at night that really effects me sleeping and i can’t stop itching. Has anybody experienced this and does anybody have any suggestions?

REPLY
Profile picture for lummy @lummy

Im 76 yrs old. Active and in good health. I’m 7 yrs out from tonsil cancer. I had surgery, radiation and chemo. I’m having constant throat clearing and now starting to cough at night disturbing my partner. I have not been consistent with swallowing exercises. Can you tell me how swallowing and coughing has been for you, especially at night. What have you found that has helped you.
Thanks,
Phil

Jump to this post

@lummy 9 years out and still dealing with the same! As for the cough ask your provider for benzonatate aka
Tessalon Perles, they are effective!

REPLY
Profile picture for taylorma @taylorma

I’m having neuropathic itch on my neck were i had radiation and my right ear at night that really effects me sleeping and i can’t stop itching. Has anybody experienced this and does anybody have any suggestions?

Jump to this post

@taylorma my husband is dealing with that. The itching at night is awful and nothing anyone prescribes seems to help.

REPLY
Profile picture for taylorma @taylorma

I’m having neuropathic itch on my neck were i had radiation and my right ear at night that really effects me sleeping and i can’t stop itching. Has anybody experienced this and does anybody have any suggestions?

Jump to this post

@taylorma I have experienced this intermittently with my ear for years post radiation. I found that an ice pack on the area for 5-10 minutes gives relief. I have also fallen asleep on an ice pack so I would put it in a closed plastic bag then wrap in a light fabric to keep my pillow dry. Had anyone been prescribed Gabapentin for this problem? I wondered if it might help.

REPLY
Please sign in or register to post a reply.