Side Effects: Skin, Swallowing, Dry Mouth

More on the subject of swallowing and eating:

Trouble swallowing. Call me ungrateful, but this is what bothers me most now. You'd think that now that I can eat what ever I want, pain free, and enjoy the taste, I'd be happy.

As mentioned before, radiation doesn't hit just the cancerous cells, it also hits normal cells surrounding the cancer.  These normal cells also die and before they do, they notify your immune system and rest of your body about their demise causing your body to try to stop whatever's causing the damage.

Of course the human body hasn't evolved any kind of suitable response for radiation damage so it does the best it can with what's at hand which is cause an inflammatory reaction at the scene of battle. An inflammatory reaction among other things causes redness, pain and swelling.

All this is going on whereever the radiation is aimed, in my case, my face and neck.  The entry point of the radiation (the skin on my neck) first turned bright red, like a sunburn and was as sore as a sunburn.  Sunburns are in fact radiation burns caused by the ultraviolet radiation of the sun, just not as intense as the type of radiation coming off of a linear accelerator.  There's a cream called Sulfadene (silver sulfadiazene) that can be used to soothe the burn and it works well. 

As treatments continue and the radiation doesn't let up, the skin begins to break down in a process called moist desquamation.  Yes, it's as icky as it sounds.  Your skin becomes moist and "weepy" as it tries to slough off the enormous amount of dead skin cells caused by the radiation.  I took to taping a 4x4 bandage with ointment over the area to keep the stuff from oozing onto my shirt and sleeping with a large washcloth over my pillow to keep from soaking the sheets at night.  It isn't especially painful, but enough so that I took to swiveling my shoulders along with my neck whenever I needed to look left or right.

As happens for some patients, it got so bad that the doctor had to pause my treatments for a few days.  My original 30 day, six week course of treatment stretched out to about 8 weeks because of the breaks in treatment due to the skin breakdown.

I hear you wondering "so what's all this got to do with swallowing?"  Remember  that radiation has an entry point (my skin), a target point (my tumor and lymph nodes) and an exit point (my throat) and that it affects everything in between (blood vessels, bones, nerves etc). Everything going on outside on my skin was going on inside my neck.

Most noticeable was the "weeping" of my throat. It felt as if there was congestion from a cold slowly building up in my throat, slowly closing off my airway. I was constantly coughing and swallowing and clearing my throat during the day and getting up in the middle of the night to have good hearty coughing sessions to clear the goop out that accumulated while I slept. I was up about 4 to 5 times each night for my coughing routine and it was absolutely miserable -- has to be one of the worst parts of my RT.   

In addition to the overproduction of goop in my neck, the radiation was also affecting my swallowing muscles.  Thin liquids like milk, water and juices gave me the most problems.  I found that swallowing a single mouthful of liquid would provoke a coughing fit because a few drops would try to sneak down my airway, but that "chugging" would allow me to swallow more liquid with the same amount of coughing -  more efficient!

Thicker liquids like milkshakes, and nutritional supplements like Ensure were easier to manage.  In fact there's a product called "ThickIt" which is a powdery something that you mix into liquids to ease swallowing.  It's nearly tasteless and other than the unusual sensation of drinking thick water, isn't all that bad.  Unfortunately I didn't learn about this product until after RT.

I still have swallowing problems even now 6 months post RT and have heard that problems can exist up to 5 years after therapy.  My symptoms aren't nearly as bad as during RT, but any trouble swallowing can lead to aspirating food into your lungs which can cause pneumonia.  I visit a physical therapist who has prescribed swallowing exercises.  They're simple and easy,  just hard to remember to do.

Dry mouth.  I'm left with a permanent dry mouth (xerostomia) since portions of my salivary glands (parotid glands) were removed during surgery and the remaining portions were in the way of radiation on its way to the tumor bed. This is common with RT to the head and neck and in some cases saliva production returns to normal afterward. It's certainly not a major threat to life but is a constant minor annoyance. 

For me the major annoyance is speaking and singing.  I enjoyed singing (a few local choral groups and church) before getting MCC, but now that I have a dry mouth, speaking or singing even a short phrase causes cotton mouth.  There's a drug (pilocarpine) that can stimulate saliva production but one first has to have the saliva glands to stimulate. Pilocarpine is also used in the treatment of glaucoma, so make sure your eye doctor knows about this if you end up taking it. There are over the counter artificial salivas too, but I've haven't used any myself, so I can't speak about how they work or how effective they are. I cope by continually sipping on water in order to keep my mouth moist. It's best to drink unsweetened or something artificially sweetened in order to keep from feeding cavity causing bacteria. Haven't heard anything bad about decaff coffee, but it can stain your teeth as I'm unhappily finding out.  

Make sure your dentist knows about your dry mouth.  Saliva, besides providing teenage boys with material for spitting, also cleanses the mouth and teeth. People with xerostomia have a larger than average incidence of cavities, so it's important to keep up with the oral hygiene. Whatever my other problems, I've been blessed with healthy teeth and have had only one small cavity in my half century of existence.  Still, today, I brush two to three times each day, floss, use a heavy duty prescription toothpaste and use a special fluoride mouthwash to keep the cavities at bay. 

During RT when your mouth is too sore to take a lot of brushing abuse, you can rinse your mouth after eating a meal.  Even if you're not able to eat a full "meal" it's important to rinse the food particles.  I was surprised at how much a simple rinse was able to dislodge and wash down the sink.  Stay away from commercial mouthwashes that contain alcohol: they dry the mouth out afterward.  If you do forget and use one of these, you'll only forget once -- the pain from one of these jokers is enough to sear the reminder into your mind.

There are several recipes for homebrew mouth rinses.  I ended up mixing equal parts baking soda and salt, then mixing 1 teaspoon with a cup of water.  I also used this mixture before bed and after my nightly coughing sessions to help thin and wash out the stuff oozing from my throat.  After coughing my lungs out, it was couple of quick "shallow" gargles and a "deep" gargle, then back to bed for another hour's sleep.