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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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He must and will prove the doctor wrong. Most of us had swallowing issues. If he can find a way to swallow and then do that as much as possible, perhaps something soft and easy be it mashed potatoes with butter or ice cream or scrambled eggs, something that works. Exercise those muscles and the mechanism all he can.
This is going to take time, months not weeks and years before things level out. Courage!
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4 ReactionsThanks all of you for sharing. My husband is 12 weeks post radiation and chemo. The main issue is swallowing. He has had a feeding tube since before radiation. He just had a second swallow study. He was told his epiglottis is not working as it should as radiation destroyed the working mechanism so swallowing without aspirating is the goal. He was told he may never be able to swallow normally again. He is doing all exercises recommended but is quite depressed thinking he may be on a feeding tube forever. Anyone have a comment on this?
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2 ReactionsMuch improved
Well after talking to my E.N. T. we have both pretty much decided that what I don't have yet after nine years isn't going to come back. After a while you figure things out, like extra paper towels for that runny nose. Lots of water and maybe even some Biotene Gel. I don't think my taste or saliva will ever get better. My hair is not coming back.But like they say you learn to live with things. I think that all of us have been through so much worse these are the little things. I did get rid of my mask after about a year but kept the pictures of it on at the machine. A lot of people don't understand things and when they see a picture it tends to help them understand a little.
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3 ReactionsThis is my current hairline situation just shy of 4 months post treatment.
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1 ReactionIf you are lucky like me the hair loss is temporary. The loss of saliva however can go on for years but in my case has improved while the nose running has almost gone completely. This recovery stuff takes years unfortunately. Broken legs are easy to bounce back from compared to this.
Wish I could find my lost hair photo to attach. But like the radiation mask and other torture apparatus, I have no doubt disposed of it in the hopes of getting rid of the nightmare as well.
I hope you heal well and fast.
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1 ReactionWell guys, I've finally found my "lost hair soul mates" I'm a woman and I had the 35 radiation treatments to the head. Like many I've lost the sense of smell, & taste .I have virtually no saliva. It will never get any better. I still have problems with eating. My teeth have suffered. My nose runs constantly, I carry select a size paper towels all the time. If you should wash them they stay together, not like a kleenex. I'm a woman and of course I know about things being left in pockets like a kleenex. Anyway my radiation was of course to my head. Actually my cancer was at my brainstem. So the radiation was at the back of my head. Now my hair is not only fine. But it is thinning and my neckline is a good inch from where it should be. Like you if I lift it up it looks like I shaved it. You ought to see it in a pony tail. What a site. Like I said at the begining of this book. I'm so tickled to now have "lost hair soul mates". I hope this put a little smile on your faces.
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1 ReactionBless you on this journey, and I wanted to share that yes, my husband had one, and it truly saved his life from being permanently, altered by weight loss, and admission into the hospital --the condition of his throat and the ruination of his taste buds left him, unable to eat, swallow.
💜 our doctor recommended he put it in before treatments began, and he is very glad that he did. How was your husband doing with his PEG?
@7881188, has Michael also worked with a speech-language pathologist? They work with head and neck cancer patients to help with swallowing, speech and more. @davidwrenn's daughter is an SLP and may have more to share.
You may also be interested in this related discussion in the Esophageal Cancer Support Group
– Anyone know of exercises or therapies to improve swallowing? https://connect.mayoclinic.org/discussion/therapy-for-swallowing/
I am happy to hear you are doing better as time goes on. We are left with od pockets in our mouth and throat that is beyond explanation to the doctors. We just learn to live with it.
In a year or so you should be doing better yet. It's good to be on the green side of the grass. i wish you well.