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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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Absolutely, keep up the great work!
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1 ReactionThank you so much for the encouragement. Yes I can do without pain meds other than I take liquid Tylenol 3 times a day.
This morning I ate an egg. On the fridge my wife has a saying. Courage-"Understanding your weaknesses and doing something about it." So with every bite I said courage. and then chased it down with a mixture of Gatorade and water. After that I had a Boost 530 with another 4 oz of Carnation Instant Breakfast drink high calorie. This is definitely a a day to day fight. But one worth getting in the ring everyday.
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5 ReactionsHey Dave,
Most times radiation results no saliva as it did for me.
I will be 7 years out in November and still have dry mouth and nothing has helped.
As for your liquid diet at 6 weeks out.
If you’re able to ingest by mouth you are fortunate.
Keep using your throat!
It took nearly a year before I could ingest oatmeal.
Talk to your oncologist about pain management.
But, if you can get by without pain meds then I suggest staying off them.
Fight the good fight!
MOJO
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1 ReactionOh my cancer is squamous cell at the base of my tongue. It has spread into a lymph node on my neck. My GP found that and that is how the cancer was discovered in late Feb. 23. The Mayo Drs said stage 1 , we caught it early. I had no pain or discomfort pre diagnosis. I go back Aug 21 for scans to see if they got it.
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2 ReactionsI am doing soups, yogurt, high calorie boost, scrambled egg, I even did some salmon last Sunday.
Thank you for your encouragement. I feel physically I’m about 75% yet I am grounded in my faith in Jesus Christ and then there is my wife. She is pulling me through this time. I hope you are recovering well.
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2 ReactionsHi @davehutsell. You just happened to catch me browsing mid-day. Too much saliva would make a lot of us envious. This issue seems common to mouth injuries and certainly to oral surgeries probably as a mechanism of the body to fight off bacteria and keep the mouth clean. Not that this is comfortable for you by any means.
It probably seems like you will never get better but chances are you will. It just takes months and for some issues years. Either the problems go away or we just get used to living with them. I think in three months you should be much improved.
Liquids only or can you do soup, oatmeal, custard, etcetera? My favorite was Root beer Floats but that is basically liquid I guess. My wife made several items one night where I tried different foods and was surprised at what I could swallow, what tasted good, and what tasted like a sewer pipe.
As we encourage, think positive. The odds are in your favor. You win this you can win at so much more in life. You are in the midst of a life changing experience. You can reach out to me and others anytime with questions (although it may take more than five minutes for a response). If you include a bit of detail as to type or location of cancer this can go a long way on specifics. So welcome and I wish you fast healing.
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1 ReactionThanks for the update. I am 6 weeks out of radiation and chemo and my problem is too much saliva. I go through boxes of tissue throughout the day. I still have pain in my throat and am pretty much on a liquid diet. Hoping it gets better.
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1 ReactionMalt 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.
Thank you
Hi 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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