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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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@lummy This has been an ongoing problem since having had radiation in 2003 for stage 4 tonsil cancer. Seasonal allergies exacerbate the problem as well as any respiratory ailment. We have air purifiers in every room and a humidifier in the bedroom. These help. Because of aspiration I am now on a G-tube for all of my nutritional needs. However each morning I have a cup of coffee with ice cream stirred in. Swallowing this helps loosen the mucus and I'm able to clear much of the phlegm. I also take a sip of lime soda or other carbonated beverage to help loosen and cough up the phlegm at other times of the day. I rarely cough in the night. Good luck with this, it is one of many side effects of radiation and chemo, as my ENT said, "Radiation the gift that keeps on giving."... He also told me about 12 years out that he didn't really expect to see me - well it's now 23 years and I'm 80! Take care!
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2 Reactions@omaest thank you for your response. I’m happy to know you have outlived your ENT expectations. I am hoping I can continue to live a long happy life. “The gift that keeps on giving” is an understatement. We are living that “gift”.
Have a good life.
Phil
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2 Reactions@lummy
I was getting aspiration pneumonia like it seemed for the last 2yrs. since my tongue cancer surgery and actually one time had to go into the hospital as the infection was so bad, I was having a hard time breathing and they took 7 liters (not a typo) of infection out of my lung cavity. So, I did a lot of research and yes, my speech-language therapist too mentioned the brushing before meals and afterward too, but a lot can happen at night when you are sleeping and might not know you are still aspirating on your own salvia. I also saw a pulmonologist.
So, here is what I started this year 1/01/26 and so far, it seems to be working, and I feel my lungs getting stronger and hardly any or no mucus in the morning when I awake. I make 2 cups of warm water with 1 teaspoon of baking soda and 1/2 teaspoon of sea salt and shake it well in a small container. Before each meal, I pour some of the mix into a clean glass and swish in my mouth and gargle and spit it out. After the meal, I will floss my teeth and leave out my mix to use before other meals of the day or in between if I sense some congestion and at night put the leftover into the fridge. The mixture will last a few days and when it runs out, I make a new one.
At bedtime, I will brush my teeth and floss and use Listerine Total Care NON-ALCOHOL mouthwash. I try not to eat anything 2-3 hours before bedtime to help prevent any acid-reflux issue which I have never been diagnosed for or take any medication for it, but pulmonologist mentioned that some people don't realize they can have some form of it when sleeping and head & neck cancer patients will be more prone to it. With that info. I also try to start sleeping on my left side which also helps being preventative. In addition, I have an ergonomic pillow which I put on top of an adjustable wedge pillow so I'm at least 30 degrees which is about 6-8 inches above the mattress. To prevent hip and lower back strain I added a knee pillow (as seen on TV) for between the knees for alignment.
The goal of this nighttime setup is to reduce nighttime aspiration, reflux, mucus buildup, lung infections especially aspiration pneumonia, and improve morning coughing. I can tell you, within 6-7 days of doing all of this, I was in a lot better place, and I can take way deeper breathes with my lungs now without coughing or hearing any wheezing and just feel plain better health wise.
Good luck on your journey.
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3 ReactionsHello @roblem
Thanks for your recipe for success with aspiration and nighttime coughing. I may try some of your suggestions. It sounds great that you have improved things. With all the cancer related side effects, it seems some are not to be overcome. You have done a good job for yourself.
Have a good life,
Phil
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1 Reaction@omaest I’m in the same boat, I had tonsil cancer in 2010 with radiation and chemo. I have had aspiration pneumonia several times and I’m strictly on a feeding tube. I have mucus as well. I will have to try the coffee and ice cream. I do like a cup of coffee a day. I agree radiation keeps giving.
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3 Reactions@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.
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3 Reactions@roblem Thank you for your suggestions. I'm going to try your soda/salt mouth wash!
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1 Reaction@omaest
I believe I am going to try the mouthwash, too..
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1 Reaction@lummy I second that suggestion from @hrhwilliam. I run an ultrasonic humidifier beside the bed all winter. It really cuts down on the coughing from dryness. I also use the dry mouth disks Xylimelts which stimulate saliva production all night long. That helps the dry mouth if you notice that as well.
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2 Reactions@sepdvm
I like the humidifier idea…
Thanks for the suggestion. XyliMelts are great!