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

Posted by William Olsen, Volunteer Mentor @hrhwilliam, Apr 23, 2023

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.

7881188 | @7881188 | Jul 24, 2023
In reply to @snotbox2014 "My doctors recommended one and I waited for about a week. I hated it but I..." + (show)
@snotbox2014

My doctors recommended one and I waited for about a week. I hated it but I knew it was the best thing for me. I had mine for about 5 months total. During and after treatment. I found that even trying to eat for me it was almost impossible. But i did my Boost milkshakes. I used them for a good year. I ate things that I could but to say I ate a meal would be lying. It is terrible trying to swallow anything including water. Food doesn't taste like food. Heck it doesn't even taste like dog food. I posted earlier how I did my milkshakes but if you can't find it and would like it I'll be happy to do it again. If he wants to try food have him try babyfood fruit. strained. It might go down easy and it does have a taste to it. If he is using the feeding tube and isn't hungry it could be because he is getting so much from the tube that he is full. If thats the case maybe he could cut back a "little" from the tube. How about egg drop soup? there is a flavor but not strong and it's easy to go down. I'm 9 years out and still have problems with eating. I've learned that the best you can do is give something a try. One bite. If it doesn't work, no worries. I have stayed away from spicy foods. Beef in any form is so so so difficult especially hamburger. Remember that you must drink when you eat. A bite and a swallow of liquid. milk or water, warm tea. Coffee didn't do well for me. If his saliva is diminished it will be harder to eat. That's why I say soft and lots of liquids. Also don't lay flat. Keep a 45 degree angle. Keeps food down. I'm sorry about writing my books. I wish I had had more suggestions when I was relearning. When he does start to eat real food and you go out to eat try to find buffets. I still like them best. I could try different things and not be stuck with maybe something that didn't work for me. I always did that one spoon thing. Still do. Best of luck. I promise it WILL get better.

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Thank you. And we’d love the Boost recipe. And will try egg drop soup, something he loved. We know it will be a long drawn out recovery, so many people have said so. Trying to get used to that idea! He does need to drink between bites.

All the best to you too.

REPLY
rkaspet | @rkaspet | Jul 25, 2023
In reply to @davehutsell "I am 3 month out of radiation. I can’t say I have much of an appetite..." + (show)
@davehutsell

I am 3 month out of radiation. I can’t say I have much of an appetite but I know i have to eat.
For me cup a soup is tolerable so I use it as a flavor base to add calories. Boost 530 cal. Is good to maintain.
There are times I wish I had opted for a feeding tube but still making myself get liquids down is working. I was not aware of drugs that increase appetite. Sounds interesting. Said a prayer for your husband.

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I finished up my treatment December 23, 2022 it’s been almost 7 months and I’m starting to recover. I’m able to eat and swallow sometimes a bit stuck in my throat but I learned to use gravy and have water close by what I mean in the first three months out of my treatment. I lived on boost and help me get through some tough times. I had some other symptoms, dry mouth and affect my speaking a little bit. I have about 75% of my taste buds back so hang in there it will get better.

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2 replies
davehutsell | @davehutsell | Jul 25, 2023

This is a long haul. I have a friend who went through this 20 years ago. His was stage 4, They radiated him to the point he thought he would not make it. It took him 2 years to feel normal as he remembers it. Today he is an encouragement to me. The radiation is tough for sure but every day we fight to recover is a good day.

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snotbox2014 | @snotbox2014 | Jul 25, 2023

Boost makes a dry powder . think Nestles quick. Same place in the store as boost. I always bought the high protein. I used chocolate. here ya go. One boost liquid, powder to equal a boost. "its on the container". Use good ice cream and whole cream "whipping cream" . I made milkshakes out of this. Don't skimp by using low fat anything. The fat and protein will help with his weight. The boost has the vitamins. make sure that you use the powder. It gives you more of the good stuff. I always used a straw. It depends on how he is with the mouth and swallowing. Also go online to Boost.com I think. look up and see if they have coupons that you can print out. And if you need more maybe you could ask a friend or two to print them for you too. you can write "e-mail" them and they might send some. Sometimes the doctor or nutritionist has coupons too. My milkshakes kept me going for a year. Also I used to make them and pour into a thermos if we went someplace for a couple of hours or so. They might not be thick but will still be good. Also if he is tasting a metal taste when he uses utensils use plastic. Try not to give him things out of cans. The taste is horrible. It took me a long time before I could use regular silverware again. my last treatment was the day before Christmas 2014. I still have trouble at times with food. Tell him not to get discouraged it does get better. They checked my throat too and it was fine. It didn't feel like it to me. LOL Remember if it was sour before it's gonna be worse now. Eventually something is gonna sound SO GOOD till he tastes it and then it's gonna be so BAD. But that is from the radiation. Some things won't ever taste like they used to. Some things will taste better. Give everything a chance. he'll do good it just takes time. If I can help in any way just give me a holler. my friend tells me I write books. sorry.

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snotbox2014 | @snotbox2014 | Jul 25, 2023
In reply to @rkaspet "I finished up my treatment December 23, 2022 it’s been almost 7 months and I’m starting..." + (show)
@rkaspet

I finished up my treatment December 23, 2022 it’s been almost 7 months and I’m starting to recover. I’m able to eat and swallow sometimes a bit stuck in my throat but I learned to use gravy and have water close by what I mean in the first three months out of my treatment. I lived on boost and help me get through some tough times. I had some other symptoms, dry mouth and affect my speaking a little bit. I have about 75% of my taste buds back so hang in there it will get better.

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congratulations on getting those tastebuds back. I'm still working on those and my saliva still isn't very good. I still get things stuck at times. I guess it's just part of it all.

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1 reply
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jul 26, 2023
In reply to @rkaspet "I finished up my treatment December 23, 2022 it’s been almost 7 months and I’m starting..." + (show)
@rkaspet

I finished up my treatment December 23, 2022 it’s been almost 7 months and I’m starting to recover. I’m able to eat and swallow sometimes a bit stuck in my throat but I learned to use gravy and have water close by what I mean in the first three months out of my treatment. I lived on boost and help me get through some tough times. I had some other symptoms, dry mouth and affect my speaking a little bit. I have about 75% of my taste buds back so hang in there it will get better.

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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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 26, 2023
In reply to @7881188 "Yes we have had visits with Karen the Nutritionist! She has helped immensely to get us..." + (show)
@7881188

Yes we have had visits with Karen the Nutritionist! She has helped immensely to get us into proper tube feeding using a gravity bag. But now Michael is supposed to start eating when he can. He is doing mouth and jaw exercises. But he has much trouble with food ‘burning’ his mouth. He has some open sores that have not yet healed. We have tried almost every bland tasteless soft food we can think of and vanilla pudding is all he tolerates. He is 10 weeks post radiation now.

His eating or not eating has nothing to do with appetite or wanting to eat. It’s a matter of learning how to eat again using muscles that have not been used in months. Hence the exercises. His mouth hurts too much when trying to eat. He is able to take sips of water!

I’m going to ask his doctor if he may need stretching of his esophagus as he complains of food getting stuck!

Thanks for having this site. I’m hoping we can help someone else going thru this. Michael has oropharyngeal cancer/HPV. And we are looking for help from any of you with suggestions.

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@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/

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westand731 | @westand731 | Jul 30, 2023
In reply to @7881188 "Has anyone here had a feeding tube put in before starting radiation! My husband has one..." + (show)
@7881188

Has anyone here had a feeding tube put in before starting radiation! My husband has one and cannot eat at all yet…

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Bless 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?

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snotbox2014 | @snotbox2014 | Aug 3, 2023
In reply to @smittyfromcuse "I also had the hair on the back of my neck come off in a straight..." + (show)
@smittyfromcuse

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.

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Well 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 reply
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Aug 3, 2023
In reply to @snotbox2014 "Well guys, I've finally found my "lost hair soul mates" I'm a woman and I had..." + (show)
@snotbox2014

Well 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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If 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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