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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 everyone, i was under the impression that all would be well after my surgery too, which was the radical neck dissection to the right side of the thyroid. i am in severe pain each and evry morning on the right side, lets up some after movement but when i start to do small things the pain just radiates to my back. thing is i know the radiation that you have had will not be the same radiation that i have to get which is 1131 radioactive iodine pill. since it goes down the throat i feel i will be having the same trouble as everyone else on here, has anyone had this radioactive pill? i am already having trouble swallowing, i have no voice, have alot of coughing spells. my mouth is so dry and i just can't imagine how it will be after the pill from what i read everyone else saying on here. i am already set up with the sour lemon candies, thing is my TSH was low so now i have to stay on the low iodine diet for another week before i can do the radioactive iodine pill. thank you for listening and wish everyone wellness and happiness as we not have to accept our new normal.
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3 ReactionsDid you have an option for surgery?
I’m 6 years out from radiation and have been hit hard. Necrosis of the tongue, osteonecrosis, and radiation induced brachial plexus neuropathy. Have you had any of those?
Hi Vsamples, I did have osteonecrosis which I finally had resolved two years ago with a day-long surgery and several follow-ups. Neuropathy in various sectors finally either worked themselves out or I just plain got so used to it it goes unnoticed. But I am almost 22 years out now. At six years it was still a battle. I hear you. The creepy-crawlies on the face, neck, and arms, I think the CIA should adapt as information extraction tools.
We walk this world a bit broken and as we meet people or associates we think that everyone else is doing just fine. So when they ask how we are doing we say we are fine or coping or on-the-mend and we give a pirate smile as best we can do. And later we go home and cry a bit over self pity until we realize that many people have issues and hopefully ours will get better. And speaking for myself, they do get better.
I wish for you improvement day by day, year by year. Enjoy life best you can. Maybe not ride a bull named Fu Man Chu but at least watch someone else do that crazy thing. In time (years) it should all get better. Stay on this forum and help others I hope. Keep in touch.
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5 ReactionsRadiation going OK so far? A bit freaky being strapped to a table whilst everyone leaves the room isn't it? And they always say "Just relax".
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1 ReactionI am so glad to find this website with real problems, by real people. My story concerns my husband. He had surgery for a carcinoma on top of his head with 17 radiation treatments. Following the treatments he completely lost his appetite for food. He had every kind of test, in hospital and out. Was prescribed all kinds of medicine, even Marinol (marijuana without the THC). Nothing has helped. The doctors have basically said we have done everything, and don't have a solution for him. He is slowly wasting away. He weighs 89 pounds now. I didn't know that a person could live at that weight.
Is there anyone out there that has experienced not having an appetite after radiation treatment?
Thanks
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1 ReactionSo sorry to hear that the doctor can no longer help. Please don’t stop reading. If you open the King James Bible the 1611 version and open it at Mark 6:13 you will find a possible solution to your problem. Anointing for healing consists of getting virgin olive oil (oil of our people)take a small amount and asking God to bless it, and use that blessed oil
( small amount on his forehead) and ask the LORD to anoint and heal and return his appetite to your husband with his agreement to do this.
I’m praying for you both
GOD bless
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2 ReactionsHow long ago were his radiation treatments? The reason for this question is that in some patients radiation sickness occurs, which will kill the appetite and alter the taste. This is usually temporary for only a few weeks.
If longer then something else may be going on, unknown to me at least. Talk to his oncologist and perhaps a good reminder which I have used is to mention that we don’t want to get the answers in an autopsy, rather we have it prior.
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2 ReactionsAppetite loss can be a problem for patients after radiation.but should improve. Does he not have a life saving feeding tube? He can get enough calories through the tube to either gain weight or sustain his current weight which to me is not normal. I can see of no reason you mentioned why he wouldn't have one.
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2 ReactionsWe have heard that proton therapy does not carry these side effects .. or not many of them. They are horrid, almost unthinkable. Were you a candidate for proton therapy? I'm going to investigate it again ... God bless you in your journey. I admire your optimism. Thank you for sharing your very personal story. We are just beginning our journey Week 1 and my husband is very ill .. I want to weep, but I will be as strong as possible.
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