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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.
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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.
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1 ReactionHi @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?
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3 ReactionsI 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.
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3 ReactionsWaiting 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 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.
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2 ReactionsI would say sometimes, actually it depends on the spices she cooks with
You have been through so much, and your attitude is an inspiration. My question is: can you taste the food that your wife blends for you? My husband is still on Kate Farm food four times a day, or as much as he can tolerate which is sometimes less. He is trying valiantly to eat and drink but it’s a very slow and painful process. We looked into the “IQoro” device available in Europe but found that it cannot be sold to the US. Not FDA approved. Disappointed as it sounded like it would be helpful in strengthening muscles used in swallowing. We will be looking into “red light therapy” also. Good luck to you and all other neck cancer patients. I have found this forum helpful!
Robert,
You've got great attitude-keep chugging along. You inspire me!
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1 ReactionI've been on a feed tube since 2014, not sure if your aware but you can order gravity feed bags with a large bore (larger tubing) and what the wife dose is take a large can of hungry man soup, puts it in the blender with 2/3 of a can of water blends for about 2 min, heat in microwave for 45sec, (helps oils from clogging tube), pour into bag and serve. I do not use a feed pump so I connect right to my feed tube and fully open valve. nice alternative from formula every day. I'm stuck with this feed tube for the rest of my life, so I experiment start with creamy soups like mushroom, chicken, shrimp, tomato etc. do not use soups with a lot of beef, burger is ok if blended well. My wife also cooks up certain dishes that can be blended or liquified. Do not use vegies tha have a hull or are stringy (corn, celery, etc.) since 1999 I've had 4 MAJOR oral cancer surgeries, 35 radiation treatments 4 chemo and 5 outpatient surgeries, saliva thick as Jello, half a Tongue and can't swallow. Hope this is helpful and God Bless you all, I feel your pain
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9 ReactionsThank you. ❤️