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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 @snotbox2014 , great handle by the way. I think most people and many doctors will never understand what we have been through and continue to live with. However, that said, I think it just might make us appreciate life a little more than most.
I think you can help people out on these discussions so I would hope you get a feel for how this all works and help people especially with Nasopharyngeal Cancer, which is a rare one on these pages. Sorry you have had and continue to suffer the consequences of radiation and treatments. At least now you don't have to suffer alone. I got through my nightmare with the help of others in this forum. So, welcome.
I have always LOVED salmon and I can actually cook it myself and eat it. I do need like a sauce or butter or something with it. But not too strong. A lot of times I use ranch dressing for a sauce with things if it's difficult to eat. I used to live on lake Erie and we fished for perch and walleye. Used to eat it like it was going out of style. After I got sick I cant do it anymore. I do like cracker barrel catfish "fried". And they have pretty good cod. I can't eat a hamburger. It turns to crumbles and will barely go down. White bread is also a no. I can eat breads that are chewy like a bagel or english muffin toasted . regular bread turns into dough. Beef is very difficult for me. I do eat chicken but dark meat is easier. I like it baked and I do make fajitas. I do pretty good with the wraps. But I am about 9 years out. Eggs are almost a total NO. Hard boiled in a salad or deviled I can do some. I had a grilled cheese the other day. That was a first in a long time. All you can do it try and if it isn't doing anything good for you don't push it. Good luck and keep up the salmon eating it's good for you.
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1 ReactionThank you so much. As I said I couldn't have asked for better care. I still see my oncology ENT yearly. And look forward to it. And who loves to go to a doctor? I am in a pretty rare group of people with this cancer. Especially being a Caucasian woman. Since it is mostly seen in oriental men and Caucasian men. When I was in the hospital I had doctors from different hospitals from around the country coming in to see me and what was being done with me. I had no idea but hey if it helped I was all for it. When my "I call him my radiation doctor" He is actually a radiation oncologist. when I would see him he always had a student with him and I always let the student do anything that he needed to. The camera up the nose wasn't always great but hey they HAVE to learn how to do it and a real person is the best way. Of course the doctor was always right there. As I said very lucky. thank you so much for the welcome. If I can answer any questions I'll do my best.
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1 ReactionMy husband was seen at Mayo Clinic for his loss of appetite and severe weight loss and they put him on Mirtazipine. He had tried numerous other medications prior to our Mayo visit, none of them worked, including Marinol. Remeron is another name for it. Very effective appetite stimulant.
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2 ReactionsI am 3 month out of radiation. I can’t say I have much of an appetite but I know i have to eat.
For me cup a soup is tolerable so I use it as a flavor base to add calories. Boost 530 cal. Is good to maintain.
There are times I wish I had opted for a feeding tube but still making myself get liquids down is working. I was not aware of drugs that increase appetite. Sounds interesting. Said a prayer for your husband.
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1 ReactionHas anyone here had a feeding tube put in before starting radiation! My husband has one and cannot eat at all yet…
I had one put in 3 weeks after my radiation started and it was an experience I would never want to go through again. The doctors told me to consider it prior to radiation, but I held out because I was vain. I was so weak by the time I had the feeding tube installed it impaired my recovery. I should have listened to them.
That's a good question, @7881188. Like @jimthomasintl, some people have the feeding tube after treatment and others before treatement. I'm tagging a few other members like @calenbd @joy345 @snotbox2014 @yolande73 @sepdvm @nnurse on this discussion to gather their experiences.
It sounds like your concern is not necessarily when your husband had the feeding tube inserted, but rather that he is not able to eat anything at all yet. It can be hard and I'm sure members have tips to share to help with eating.
Has your husband been working with an oncology dietitian to help him get used to the feeding tube? And to help you, too?
Yes we have had visits with Karen the Nutritionist! She has helped immensely to get us into proper tube feeding using a gravity bag. But now Michael is supposed to start eating when he can. He is doing mouth and jaw exercises. But he has much trouble with food ‘burning’ his mouth. He has some open sores that have not yet healed. We have tried almost every bland tasteless soft food we can think of and vanilla pudding is all he tolerates. He is 10 weeks post radiation now.
His eating or not eating has nothing to do with appetite or wanting to eat. It’s a matter of learning how to eat again using muscles that have not been used in months. Hence the exercises. His mouth hurts too much when trying to eat. He is able to take sips of water!
I’m going to ask his doctor if he may need stretching of his esophagus as he complains of food getting stuck!
Thanks for having this site. I’m hoping we can help someone else going thru this. Michael has oropharyngeal cancer/HPV. And we are looking for help from any of you with suggestions.
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2 ReactionsMy doctors recommended one and I waited for about a week. I hated it but I knew it was the best thing for me. I had mine for about 5 months total. During and after treatment. I found that even trying to eat for me it was almost impossible. But i did my Boost milkshakes. I used them for a good year. I ate things that I could but to say I ate a meal would be lying. It is terrible trying to swallow anything including water. Food doesn't taste like food. Heck it doesn't even taste like dog food. I posted earlier how I did my milkshakes but if you can't find it and would like it I'll be happy to do it again. If he wants to try food have him try babyfood fruit. strained. It might go down easy and it does have a taste to it. If he is using the feeding tube and isn't hungry it could be because he is getting so much from the tube that he is full. If thats the case maybe he could cut back a "little" from the tube. How about egg drop soup? there is a flavor but not strong and it's easy to go down. I'm 9 years out and still have problems with eating. I've learned that the best you can do is give something a try. One bite. If it doesn't work, no worries. I have stayed away from spicy foods. Beef in any form is so so so difficult especially hamburger. Remember that you must drink when you eat. A bite and a swallow of liquid. milk or water, warm tea. Coffee didn't do well for me. If his saliva is diminished it will be harder to eat. That's why I say soft and lots of liquids. Also don't lay flat. Keep a 45 degree angle. Keeps food down. I'm sorry about writing my books. I wish I had had more suggestions when I was relearning. When he does start to eat real food and you go out to eat try to find buffets. I still like them best. I could try different things and not be stuck with maybe something that didn't work for me. I always did that one spoon thing. Still do. Best of luck. I promise it WILL get better.
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