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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 @joeystarr and welcome to Connect Head and Neck Cancer group. I would think the reference to radiation breaking the jaw is most likely the possibility of osteoradionecrosis, which occurs in a limited number of patients and usually after several years. A lot depends on the location of the beam projection and the type of radiation beam used (proton being the most accurate).
Feel free to look through the many posts in this group, the search component can be a great help as it is geared to areas within this group primarily.
You are a good friend to help someone through this difficult and stressful life changing journey. Feel free to post questions or start your own Discussion, which alerts others to offer up help and advice.
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1 ReactionI had a hard time with that mask. I ended up making myself cds of my favorite songs and had the techs play them. That got me through it.
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2 ReactionsI am 4 1/2 years out of radiation and chemo for cancer in both sides of my neck. It was stage 4 when diagnosed in 2018 even though the tumors were very small. It was in my lymph nodes. This was after 5 years of being cancer free from stage 1 floor of mouth cancer surgery in 2013. I did not have radiation or chemo.
The dry mouth is by far the worst side effect for me. Eating is still hit and miss. I prefer eating alone because it takes soooo long. Restaurants are no longer places I look forward to going to. I still supplement my diet with 530 calorie Boost, which I was so thankful to find out about. It really helped me add weight and get stronger when I was trying to get off the tube.
On a good note, I'm still getting nice surprises when I try a food that I couldn't eat last year, but now can. So I'm definitely still healing. I still, and probably always will, have water with me at pretty much all times. Having so little saliva is challenging not only for eating but for speaking. A medicine that works well for me is Pilocarpine. I take one every few hours and it helps produce saliva pretty effectively. My quality of life is much better with it. Although I've read some people sweat too much. It's very expensive at some drug stores like CVS, so shop around.
The physical issues I'm dealing with besides dry mouth are stiff muscles, especially in my neck and shoulder area and my arms will go numb if I hold them up high. I think I may have a bit of nerve damage but it's not that uncomfortable or disabling enough to have any kind of surgery. I found a 20 minute muscle stretching video and it's been so helpful. I feel a lot more flexible, energetic and light on my feet.
I think the only other issue I'm dealing with is sleep. I have not slept all night in 4 1/2 years. I'm typically up every 2 to 3 hours to use the bathroom, I drink water all day. I did find a tablet that does help with the dry mouth at night. You stick it on your gum and it slowly dissolve creating moisture all night. They're call Xylimelts.
Overall, I feel very, very thankful every day. We have all been through a journey that we did not plan, and certainly did not look forward too, but we've made it. Just gotta keep on keepin' on and pray for good visits.
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6 ReactionsNever heard of that happening. Did he have surgery first?
I had a neck dissection and lingual tonsils removed.
Jaw will be sore and there are jaw exercises. Had a speech therapist lined up as part of the recovery. Best of luck
I still get some dry food stuck in my throat, and it’s been almost 11months . But my taste buds are getting better, my teeth don’t hurt as much and I feel a lot better ,so hang in there.
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4 ReactionsThank you. ❤️
I've been on a feed tube since 2014, not sure if your aware but you can order gravity feed bags with a large bore (larger tubing) and what the wife dose is take a large can of hungry man soup, puts it in the blender with 2/3 of a can of water blends for about 2 min, heat in microwave for 45sec, (helps oils from clogging tube), pour into bag and serve. I do not use a feed pump so I connect right to my feed tube and fully open valve. nice alternative from formula every day. I'm stuck with this feed tube for the rest of my life, so I experiment start with creamy soups like mushroom, chicken, shrimp, tomato etc. do not use soups with a lot of beef, burger is ok if blended well. My wife also cooks up certain dishes that can be blended or liquified. Do not use vegies tha have a hull or are stringy (corn, celery, etc.) since 1999 I've had 4 MAJOR oral cancer surgeries, 35 radiation treatments 4 chemo and 5 outpatient surgeries, saliva thick as Jello, half a Tongue and can't swallow. Hope this is helpful and God Bless you all, I feel your pain
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9 ReactionsRobert,
You've got great attitude-keep chugging along. You inspire me!
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1 ReactionYou have been through so much, and your attitude is an inspiration. My question is: can you taste the food that your wife blends for you? My husband is still on Kate Farm food four times a day, or as much as he can tolerate which is sometimes less. He is trying valiantly to eat and drink but it’s a very slow and painful process. We looked into the “IQoro” device available in Europe but found that it cannot be sold to the US. Not FDA approved. Disappointed as it sounded like it would be helpful in strengthening muscles used in swallowing. We will be looking into “red light therapy” also. Good luck to you and all other neck cancer patients. I have found this forum helpful!
I would say sometimes, actually it depends on the spices she cooks with