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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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This is my current hairline situation just shy of 4 months post treatment.
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1 ReactionWell 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 ReactionsMuch improved
Thanks 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 ReactionsHe 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 Reactions@7881188 Hi. I was on a feeding tube after radiation treatment for months. Also, two Swallow Studies were done. The first one showed what your husbands result showed. The epiglottis wasn't functioning properly. I kept up with the exercises and waving the red-light therapy wand around the back of my throat. Also, I kept eating and drinking against their wishes. By the time the second study time rolled around, the flap (epiglottis) was functioning again almost normally. The feeding tube fell out on its own and that was that. It is still hard to swallow some foods and I must drink water when eating to swallow. All I can say is my situation. As long as he can cough, the little he would aspirate shouldn't hurt him. All in all, the entire healing process time it took to regain my ability to eat, and talk took one year. Patience is key here. If he gives up, he will be on a feeding tube the rest of his life. Keep up the exercises, research the red-light wand, be stubborn, and pray. Best wishes to you both.
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2 ReactionsHi, I have been post H&N cancer treatment for 6 1/2 years and the journey has had its ups and downs. My issues were as follows:
1. Feeding tube inserted 2 weeks after radiation treatment began an remained in stomach for 9 months. If I would not have been on the tube, I would be dead. I was unable to eat anything and was hospitalized for 6 weeks. I had lost 70 lbs over a 6 month period
2. Swallowing was the first issue that needed attention. I started with the softness food possible, DQ ice cream worked for me. Only the ice cream with chocolate, strawberry etc flavoring. This was in addition to the benefits of the feeding tube. I needed the caloric benefits from the feeding tube sessions 3 times daily.
3. Get to exercising as soon as I feel I was able. The strength was a factor BUT I believed if I stayed in bed etc and continued to feel sorry for myself, I would NEVER get out of that hospital.
4. Went to every radiation treatment for 6 weeks. If I was going to hopefully beat this cancer, I knew that each treatment session would been critical in the long run.
5. Current Status: Dry month and throat are a given. I drink plenty of fluids and a couple of beers everyday which has helped with my swallowing. I know it will NEVER be the way it was pre-radiation BUT I am still alive so I have learned to live with it.
6. I lost all but 2 of my bottom teeth and had to replace them with a full partial.
7. I no longer can eat any meat/pork or any food that requires saliva to break it down. Further, my throat is smaller so all food must be chewed for several minutes before I attempt to swallow it OR I will choke. Items will get stuck on the small craters in my throat that are the result of high dosage radiation to my throat.
In sum, I hope I have assisted you with some of my post-radiation effects BUT please remember everyone's results are different. What I believe is true is that, you can overcome any of the issues you may be having by
believing in God and your doctors BUT you need to do the work nobody else can. I wish you well and God Bless.
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10 ReactionsIt sounds like you did everything right and still ended up with a plate full of issues. I often wonder if later on our issues go away or we just get so used to them that they seem normal and therefore disappear in our mind rather than in our body. I too chew for a long time and am often the last to finish a meal.
My biggest complaint is medications which come in the size of horse pills sometimes. I tell the pharmacist I cannot swallow such things. Do they have similar in smaller size where I can take twice as much or perhaps liquid? I am often met with bewildered stares.
Believe it or not, in my case and others, things may continue to improve as the years go by. Either like I said we get used to the issues, or perhaps its age, or actual real improvement. Ten or more years out seems to be a better mark. It took that long or perhaps longer before I could sleep through the night without getting up to relieve dry mouth or wake up from choking due to lack of saliva.
I wish some day folks like us could get together for a big group hug because some days we all could sure use one. In the meantime, please continue to post your experiences and your help with new patients or their caregivers. Your input and assistance is very much appreciated.
Your last line paraphrases Oliver Cromwell to wit: "Believe in God but keep your (gun)powder dry."
Bill
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5 ReactionsBill,
It is a grind isn't it. But every time I say that i'm thankful to have options to live.
As for horse pills,,,I crush the large ones in a pill crussher and take the meds with yogurt, apple sauce, cottage cheese or P&J on crackers and wash it down with fluids. It takes a bit longer and still tastes awful but I get the meds down. I do this 2X/day. It does take longer but worth the time.
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1 ReactionThank you for the information. My best friend is starting radiation soon. They told him it is possible the radiation may break his jaw. I'm wondering if this has happened to anyone here?