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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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Hi Suzan, wow, that is a very low weight, I can understand your anxiety at your husband's weight loss. As others have said weight is one factor that has to be kept in mind after radiation treatment. I myself experienced it first hand after 35 treatments along with Chemotherapy.
I can't understand why he doesn't have a feed tube inserted into his stomach. My "PEG" was my lifeline and remained in my stomach during and after the treatment until such time I was able to resume a sort of natural diet. How long has this been going on? I will assume he had some form of Melanoma, it being on the top of his head. The treatment is fairly radical so must have been in some form of advanced stage. Has your radiation oncologist spoken to you about his ongoing problem, if not he should be consulted immediately and get to talk about his severe weight loss? I was weighed weekly and spoke to a nutritionist each visit, both during and after my treatments.
Until then some form of supplement is needed to try and restore his chemical balance. Vitamins and Minerals are a prerequisite for his ongoing health and recovery as well as calories to start and get his weight back up. I was on eight bottles @ 300mm per day of Ensure, one proprietary brand. That was via a pumped infusion directly into my stomach. Since that time my breakfast over the past three years has been one bottle per day mixed with milk and "Milo" and made up to nearly 1 litre. In other words, a chocolate Milkshake full of goodness. Add anything like Ice Cream or other to make it as palatable as possible for him, no matter what, he needs a good feed. My appetite didn't really return for nearly six months albeit an odd one, but no matter I started to put some meat on my bones.
Hopefully this has been some help and good luck in the fight.
You know if it wasn't so serious this would seem funny to the un-initiated non-cancerous person. The list goes on and on, heaps of signs, symptoms, pains, losses and general ill health.
It is a sad fact of Radiation and Chemotherapy, that they may cure the cancer but not the patient. We as those who have undergone all this wonderful modern medicine can attest that it may work, but we don't work so well afterwards. I think I have had all of the symptoms that William is going through in his list. I could keep Kleenex going with the amount of tissues I use in a year. They are now a constant companion, along with pain pills and normal medication for any number of complaints.
But! I am alive and recovering from a stage four cancer in my neck. My Oncologist said when I asked about my prognosis well, we treat everyone from stage 1 to stage 3. I asked what my stage was from stage 1 to stage 4. He said I was a 3 Plus. Because they don't treat stage 4. You just get to put your affairs in order and ensure your will is up to date.
Where there is a will there is a way. Three and a bit years on I started my course of getting new Top and Bottom dental plates today. Yes all my teeth either fell out or just plain rotted off.
Makes it a bit hard to eat when your Gabby Hayes, he was an extra star in so many old western movies and did it all with a tooth vacant mouth.
Onwards and upwards for me, pains, problems, phlegm, mucus, choking, coughing, sneezing and eating. I will be there, living the dream.
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1 ReactionThank you so much for your reply. You are right about the feeding tube. However, he absolutely refused when his doctor recommended it. I cannot seem to reason with him on that subject. He does drink one bottle of Boost+ each day along with vitamins. He eats, but fills up quickly. I try and make sure that he has whatever he wants to eat, whenever he wants to eat. He has had three surgeries so far. We have our fingers crossed that he won't need another. It started with a Melanoma diagnoses. He only had radiation for the first one. That was about three years ago. It seems to reappear every year. I always wondered if someone at Mayo Clinic could help discover what could be done to help him. We discuss his problem a lot, even have two doctors in the extended family. They think that something in his brain has been damaged by the radiation. Again, we thank you.
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2 ReactionsI had HPV throat cancer back in November 2022 , I went through seven weeks of proton radiation and six chemos Cisplatin . I am doing much better. I have some side effects like dry mouth and I’m able to eat now and I have about 70% of my taste buds back. It will only get better tell your husband to hang in there I went to the mayo clinic in Minnesota. They did a wonderful job.
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3 ReactionsOf course go to the Mayo Clinic for another opinion. They are one of the top 3 cancer centers in the country i believe. With due respect to your husband i do not understand why he refuses to have a feeding tube. i had one for 8 months because swallowing after radiation became difficult and i started to lose an unaccepted weight lose per my physicians. I was reluctant at first but found it easy for my and my family to manage. It saved my life. I am able to maintain my weight now ( however 20pounds less then my pre cancer diagnosis):with mostly ensure or boost supplements, ice cream, smoothies and soft fruits and vegetables, I have no appetite either but know i need to eat, drink to maintain my current weight. I still am unable to chew and swallow very well due to dry mouth and having a palatal prosthesis. Many foods i enjoyed before taste different and all meat because of their textures are not tolerated. Life and foods are different for sure but i have found a way to live even without my past normal life. This is what most people call their new normal. Not having a feeding tube is his choice and I'm sorry you are having to worry over his weight along with everything else. Sounds like to me he doesn't want to live. Having cancer is terrible and my heart aches for all of you, please encourage him to fight! God bless and take care of yourself
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1 ReactionI had radio iodine treatment after thyroid cancer in 2012. I still suffer side effects of runny eyes, especially after i drink water. Nodes and scar tissue in my neck still remain and now they I have chronic leukemia and a new lupus diagnosis they are worse. I suffered from laryngeal spasms (where your throat spasms and just closes completely) and probably still do just they are getting more infrequent. I have a glass or bottle of water with me at ALL times and panic when I don't have it. And still drink water to help swallow food. My husband had to grind my food for almost a year and we had a hand signal when we went out to eat with people that if I was having a spasm i would make the gesture and he would take the attention off me while I recovered. I did have a partially paralyzed vocal cord nerve after surgery so that might have made it worse. I personally believe the surgeon did not do the surgery and that, since it was a teaching hospital, I think one of his residents did the surgery because that was the "chapter" they were on. I say that only because another woman had the same surgery. Same doctor. Same hospital. Same year and month and was told she had a tumor wrapped around her vocal cord nerves just like I was told but it mysteriously never appeared in my records!!!
By the way. If you have a laryngeal spasm, the way to get rid of it is to breathe through your nose and swallow and it helps break up the lockup. In the midst of major panicking about not breathing through the mouth we forget we still have a nose!! Only ONE top
ENT knew that answer!! One.
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2 ReactionsI appreciate the helpful information very much. It really helps that you all have the experience, and can give tips for me to help my husband through this. He has good days, and bad days. I just try to encourage him in any way that I can. I know he would do the same for me. We have been married for almost 66 years. He is also my best friend. I don't want to lose him. Thanks again.
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1 ReactionHi Susan, Your line "He is also my best friend" really gets my heart as I often say that about my wife as well. She took good care of me during my cancer years and I really don't think I would be alive today without her help and encouragement.
Sometimes life happens when we are making other plans and we just have to accept and live with what is happening, as much as we wish it were otherwise. Your husband is a lucky man that he has you for support. I pray that all works out for you both and that you find peace either way. You folks set a good example for how the rest of us should live.
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2 ReactionsThank you
Malt powder!!!!! Add malt powder to your magic concoction!!!!!
I'm currently undergoing treatment for cancer round 2. This time of the throat. The radiation has done a number on my mouth & throat: sores, pain, loss of taste. Hopefully insurance approves the juice that goes into my already inserted J tube.