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.

And Now For Something Completely Different

Here I am whining and warning about what happens during my cancer treatment when along comes an email from David Haas:

Hello

I have a question about your blog. Please email me!

Thanks,

David

David it turns out is an advocate of cancer education and champions the treatment and eradication of mesothelioma, a type of lung cancer most often brought about by asbestos exposure (though like MCC, anyone can get it).

After a few brief email exchanges (one where he said I had "great content"!  Honest!) he offered to write something for this blog that suggested that you can actually do something about the trails of cancer treatment:

Thanks so much for your consideration and compassion! The article attached, which I recently completed, is about the benefits of fitness and eating healthy during and after a diagnosis of any kind of cancer. Each different cancer has its limitations, but if one can keep a healthy body, they can have a better chance to overcome this awful disease. I have linked to reputable sources and studies in this field and tailored the article to your blog. Please let me know if you are able to post the article so I can shout it out from my twitter and facebook following in order to give your site more traffic.
Thanks so much for the help and all you do for these people,

Well!  Useful advice and a chance to play with indentation and font colors have just fallen into my lap!  How can I refuse?

Take it away David!

The importance of exercise throughout treatment

Fitness is an important part of life for everyone, and as a cancer survivor it is even more critical that you implement some sort of fitness routine to your daily agenda. Everyone has his or her idea of what it means to exercise, and it doesn't have to be a boring jog on a treadmill. People everywhere are starting to energize their life by getting active.

Studies are showing that physical activity can be one of the best treatments to regain the energy you need to go on with your life. The National Cancer Institute has said that physical activity is extremely important for energy balance.

Whether you have just been diagnosed, have been going through treatments, or are currently in remission, physical activity is one of the best ways to improve your quality of life now and in the future. All cancers, including mesothelioma, can really sap your energy and make it difficult to perform every day tasks. Going for a brisk walk through the park, dancing with your spouse, or taking a light swim can all be enjoyable ways to get the exercise you need to strengthen your body and ease your mind.

No matter what you decide to do, the important thing is to get up and get moving. A little bit of increased heart rate goes a long way when you are in treatment and having a hard time with your appetite. Treatment for mesothelioma and other cancers can be extremely draining, and exercise in combination with a healthy, well-rounded diet and plenty of rest is the best way to start feeling like your old self again while you fight this new enemy.

Throughout it all, just remember that you are your best ally. Sometimes it can seem tough to get up and go for a workout, but remember that it is helping you to beat cancer and get on with the rest of your life. The extra energy gained will help you power through the rest of your day and get things done.

So remember to eat an apple a day, and take that apple with you on the go as you take control of the situation and decide how your life is going to be. You owe it to yourself and your family to stay strong and beat this.

As recent victim of Radiation Therapy and Chemo, I know whereof he speaks.

The important part to remember that any exercise is better than no exercise.  Don't feel bad if you can't do much, especially if you're in the middle of treatment.  At that point no one cares if you can't lift a schoolbus - they're just happy you're alive.

At one one point during my RT, my exercise consisted of shambling out to the kitchen for breakfast at the crack of noon, going back to bed, up again about 3:30 to get carted to the cancer center for more RT, then back to bed, finally finishing my day with a liquid supper and sleeping the rest of the night. 

Now that I'm 6 months post RT and 2 months post chemo I'm able to lift light weights and walk about a mile without having to pay for it with a weekend of sleep.  I also feel ten times better each week than the week before. It makes a difference.

You can reach David at dhaas <at> mesotheliomacanceralliance <dot> org.

Note for the internet non-savvy: David's email address has been munged to prevent spammers from picking up a valid email address.  Replace the <at> with an @ sign and the <dot> with a period to make it look like a normal email address:  name@website.org

Yes, you'll have create the email manually.

Side Effects

It occurred to me today that I never really suffered from cancer, I mostly suffered from treatment of the cancer. Of course this would have changed over time I if I hadn't chosen to suffer treatment, I wouldn't around very long to complain about the side effects of "simple" cancer.

This is only one way a diagnosis of cancer changes your life. Right now my major complaint is the damage done to my throat from the Radiation Therapy.

Not many people (including me) ever think about the side effects of radiation because it's pretty low key. Side effects of chemo are usually pretty dramatic: vomiting and hair loss are pretty noticeable to other people. The administration of chemo is also pretty dramatic. Most people have surgery to implant a port a few weeks before the chemo starts, you're hooked up to a bags of chemicals that are essentially drain cleaner mixed with poison, the actual infusion can last hours, machines are beeping, and nurses are checking on you constantly during the infusion.

(Mostly it seems to make sure you remember your name and birth date, but I'm sure there are medical reasons too. One time, when changing my IV bag from drain cleaner to insecticide, the nurse asked me for my name and birthday and I answered without thinking "Same as last time!" She must have been new because she thought that was funny.)

Radiation is major stuff too, but it's sneakier. It's colorless, odorless, invisible, silent, and you can't taste it. The actual irradiation part takes only about 15 minutes and other than a few clicks and hums, there's nothing to indicate that anything is happening at all. There's no pain or any outward effect afterward to indicate that you been blasted by an atom smasher either. It takes awhile for radiation to do its damage (it's "work") and it takes a while for its work to fade away.

I can only speak for my particular case (head and neck radiation) and I was also doing chemo concurrently in order to make the RT more effective (more damaging). I'm sure there are other side effects I haven't dreamed about, but for those of you still reading, here's what I experienced and continue to experience nearly four months after RT.

Mouth Sores. Or Mucositis for those of us who like impressing people with medical words. Chemo can also cause mouth sores but in my case I was also receiving radiation to my face and neck. And what's on the inside of your face and neck? Your mouth and throat! The dosage, placement and timing of RT is very carefully calculated to cause the maximum amount of damage to the tumor site and the minimum amount of damage to the surrounding area, but collateral damage occurs nonetheless.

The mouth soreness was mild except when trying to eat. Mostly in the back of my mouth (right where the tongue dives into your throat), it was a burning that nearly always started on the right side. From there it would spread to the left side of my mouth and burn. Fortunately the pain was alleviated by water so a swallow of water would calm things down allowing me to continue eating. Everyone seems to be able to find a few foods that are more tolerable than others and I found mine: cream of wheat, processed chicken nuggets and jello. None of it tasted good mind you, but it at least it didn't hurt as much.

There's something called "Magic Mouthwash" that can be prescribed and mixed by any pharmacy. It's a concoction of viscous lidocaine (a topical anesthetic), diphenhydramine (an anti-inflammatory) and Maalox to help coat the tissues in the mouth.  Sometime it also contains Nystatin, an anti fungal to control yeast and fungal bloom in your mouth, a result of the immunosuppression brought on by chemo.

It tastes awful and after my first swig, I wasn't even sure I was supposed to actually swallow the stuff. I swore that I'd never use it, but wouldn't you know it, it ended up relieving a lot of pain. It's effects were fairly short lived, especially when I ate and drank right after taking it, but taken before bedtime, it lasted long enough for me to fall asleep before my throat woke me up.

Now there're no more mouth sores and I can eat a fairly normal diet except for acidic and spicy foods. Tabasco sauce and the like are naturally out of the question now, but even things like salad dressing, mustard (the cheap yellow kind) and ketchup (seriously!) are off limits. I don't know how long this will last, but I look forward to the day when I can eat without fear of pain.

Loss of taste. At first food tasted funny. Then it didn't taste like anything. Then everything tasted bad. I never realized how important the sense of taste was to survival, but it's there for a reason. In my case the first thing that went was sweetness. Eating chocolate ice cream was akin to eating cold cocoa. Candy bars were just sticks of chewy stuff that was hard to swallow. It took about a month after RT was finished for my taste buds to start recovering and I tried helping things along with zinc supplements. I read on the internet that zinc was crucial for the sense of taste and there was a lot of chatter about how mega doses of zinc would restore a sense of taste. I bought a bottle of generic zinc pills and doubled the recommended dose. Still not sure it helped anything, but my doctor said that my dosage couldn't hurt anything so why not?

The bright side of this is that my taste buds seem to have made a full recovery. My wife enjoyed the look of delight that accompanied the statement, "Hey!  I can taste (a formerly untasteable  food) now!"

Stiff jaw. The RT was concentrated on the right side of my face since that's where the original tumor site was, and the tumor sat pretty much of top of my right temporomandibular joint (that's where the jaw hinges to your skull).  Dr. Guierrer warned me about stiffening of the jaw and prescribed exercises to keep the joint from freezing up. I was pretty faithful about doing them (4-5 times each day) until the pain in the back of my mouth kept me from opening my mouth more than a little bit, say about the width of two soda straws.

Before RT started, I made a stack of tongue depressors that just fit between my front teeth to gauge my jaw's range of motion.  After RT was finished, I found that I lost about half my range, but it was mostly due to the mouth and throat pain -- not muscle and tendon stiffness. I regained most of my range once the pain abated, but still needed to do my exercises regain my previous range of motion. I still feel a little stiffness and pain when I open wide, but it's nothing major. It just serves as a reminder about what I went through.

Pain when swallowing. And I mean pain like swallowing razor blades (or what I imagine what swallowing razor blades would be like). Having a kidney transplant, I take a fair number of pills each day. Usually I pile them all up in my hand and throw them down my throat, then wash them down with a drink. Not during RT. What normally was a five second operation now took minutes as I swallowed each pill, one at a time. It wasn't just pills, it was any sort of solid or semi-solid food that hurt. There wasn't much to do about it except take small bites and work through it. Liquids didn't pose much of a problem, though they presented challenges of their own.

Enough griping for now!  I'll go on about how miserable I was in a later post.