#8 – Side Effects of Cancer Treatment – Mouth

As I write this, every surface in my mouth is covered with slime and I have a metallic taste that will not go away. It is four weeks after I finished chemotherapy and almost three weeks after my last radiation therapy. This condition is called mucositis. It is caused by both chemotherapy and radiation therapy. Although it is highly unpleasant and with me the longest-lasting of any side effect, I have had little pain from it. I had been assured it was self-limiting and would eventually be resolved.

At my first visit, my radiation oncology nurse gave me a sample of a product called MuGard to deal with mucositis. He suggested I start taking it right away, to condition my mouth prior to treatment. When I took my first dose it was syrupy in texture and left a sweet taste in my mouth that lasted for hours and made me queasy. I was urged to use it anyway, and eventually it became just another part of my daily regimen.

I was also advised to see my dentist to identify any extractions, root canals, etc. that needed to be done right away. If present, it would be better to deal with these conditions first so they wouldn’t create a problem that could interrupt treatment. Also, since saliva helps prevent tooth decay and I would have diminished saliva from treatment, I would be more prone to decay. Therefore, fluoride was prescribed. I did not have any pending issues, and I began two fluoride rinses each day the weeks prior to treatment. I revised my oral hygiene habits by increasing the number of times I brushed and flossed, purchased a new Waterpik, replaced my regular toothpaste and mouthwash with Biotene (for anticipated dry mouth), and found the softest toothbrush I could.

I had been eating poorly since I found out I had cancer, and I lost about five pounds before treatment began. This was mainly due to anxiety, as I felt well at that time. My appetite was essentially gone by the second week of treatment. As treatment progressed, I tolerated fewer and fewer foods, until I was down to essentially oatmeal and Ensure. So from the beginning, eating was a serious concern, and anything that made eating more difficult was sure to have an impact.

The first mouth side effect occurred in my second week of radiation and ended with a laugh. I noticed after eating oatmeal with blueberries for breakfast that my tongue had turned black. When I asked my radiation therapist if that was a normal side effect, it caused a bit of consternation. My therapist called the resident radiation oncologist, who looked similarly baffled. It wasn’t from radiation, he told me, but he’d check further. After my treatment, he came back into the room.

“Were the blueberries frozen?” he asked.

“They were,” I answered.

As it turns out, little sacs in blueberries contain molecules that make them blue. Freezing breaks the sacs and releases the dye, which can stain the tongue. This does not happen when they are fresh, as the “milk” stays white.

I became known for a time as “the lady with the dreaded blueberry disease.”

During the following week I woke during the night with a thickness at the back of my throat. I panicked, thinking my throat was swelling, my airway would be cut off, and I wouldn’t be able to breathe. Although the sensation was only vague, the potential consequences were frightening. When I arrived the following day for my radiation treatment, I was first examined, then reassured. Yes, it was likely there was some swelling, but it would be highly unusual for this to impact the airway. I got used to the feeling and after a time didn’t notice it.

In the last post I talked about how both Cetuximab and radiation caused effects on the skin and mucous membranes. The mouth and entire gastrointestinal tract (esophagus, stomach, etc.) are lined with mucous membranes, contain the same type of cells as the skin, and are susceptible to changes for the same reasons. Most patients who have chemo and/or radiation for head and neck cancers are affected.

Mucositis covers the mouth with a sticky layer of secretions. It causes saliva to be thick and difficult to expel. The mouth may look slimy and shiny, the tissue glistens either red or white. There may be sores and a raw feeling in the mouth and throat. Putting anything in the mouth may cause burning or pain. It may be difficult to swallow. It can affect not only the mouth but also the throat and even esophagus. It can last not only through therapy but up to three months afterward.

Three weeks into chemotherapy, after two weeks of radiation, my mouth started to get sensitive and I developed a sore on the side of my tongue that made it difficult to chew without pain. I had the first sign of mucositis. I later developed additional sores on my cheeks. I kept biting them accidentally, but they were painful only when they were aggravated.

Later that same week I started having dry mouth and taste changes. I couldn’t eat anything dry, like bread or crackers, and if I didn’t move my mouth it felt like it was sticking together. After chewing for a while, I had to add water to what was in my mouth to be able to swallow it.

For a time, eating was an adventure. Everything I put in my mouth was a surprise—not unpleasant, just different. When I expected something sweet, it was salty. Salty things might be sweet, or bland. Peanut butter might taste like applesauce, applesauce might taste like eggs. I’d be prepared for a particular taste (I never lost my ability to smell), but never knew what I was going to get. It was like a game.

Gradually more foods got less appealing and I began limiting my choices. I had been eating hard-boiled eggs and biscuits daily, and thought I’d try egg salad one day. The mayonnaise made everything taste rancid. Before long most foods had a metallic, salty flavor that made me queasy. I picked the things least likely to do that, and wound up eventually with oatmeal, scrambled eggs, creamed soups, Ensure, cottage cheese, and pudding.

Next I noticed my tongue was not only sensitive on the side, but also on its surface. When I examined it in the mirror, it was not only reddened but had a deep furrow down the center. Some people have reported feeling like their tongue is going to burst, but mine never got that bad.

This photo is sort of like an emoji, isn’t it?
Redness and furrows in the tongue.
Can also see excessive dryness of facial skin in this photo.

By the end of the first month of therapy, my sense of taste was completely gone. Everything I put in my mouth tasted the same, metallic and salty, even water. The secretions in my mouth were very thick and nauseating. I had to use Zofran (my nausea medication) regularly until I could thin the secretions. The back of my throat, tongue, and soft palate felt swollen and tender. Soon I had to start taking pain medications (mostly Tylenol) regularly as well.

I’ve always been gun-shy about taking pain meds, but I knew how important it was to get a good rest at night. I had been encouraged not to deny myself pain meds, so I started to use them but with caution. At first I took Tylenol only before going to bed. Then throat and mouth pain started to get increasingly severe as the day progressed, so I took Tylenol at 7 am and 2 pm, and a Norco at bedtime. Pain meds made me more comfortable but didn’t help swallowing pain. Oddly, swallowing itself did, and it disappeared soon after I started eating.

At this point, four to five weeks into treatment, the mouth side effects hit a peak and I asked what else I could do. Help came with a clearer understanding of what each product was meant to do. The symptoms were multifactorial—a combination of ingredients, so to speak. Therefore, I needed to use each product for the symptom it was meant to fix, as no single products would address them all. Increasing regular use of salt rinses and MuGard made me more comfortable.

• Salt water rinses were effective against thick secretions. A salt rinse is made by mixing one teaspoon of salt and one tablespoon of baking soda in a quart of warm water. I gargle with it four to six times a day for at least a minute, then spit it out. I don’t put anything else in my mouth for at least a half hour afterward. I spit as much of the secretions out that I can after each use. The effect is not immediate, but when done frequently and persistently it thinned my secretions after about three days, made it easier to eat, and decreased my nausea. Robitussin also can be purchased over the counter to thin secretions but I thought it burned too much and saved it for a last resort.
• MuGard was effective in preventing mouth sores. MuGard was given to me by my radiation therapy nurse as a sample. It is not available in pharmacies, and the drug company was unwilling to sell it directly to me. Unless covered by insurance, it is probably not available. I did not have enough to get through recovery, but I do think it helped minimize my mouth sores, which likely would have been more troublesome without it. Those who don’t have access to it should ask their radiation oncologist for a recommendation.
• Biotene was used for dry mouth. Biotene is available over the counter at any drug store. I used both the rinse and the toothpaste. I don’t notice an effect when I use it, but I’m sure my mouth is better for having done so.
• A “stomatitis cocktail” was used for mouth pain. The “stomatitis cocktail” is a prescription mixed by the pharmacy. It is sometimes also called Magic Mouthwash. The components may vary somewhat according to the prescription. Mine consisted of lidocaine (a local anesthetic) and Benadryl for pain, and Maalox to coat the throat. I found it burned and preferred not to use it unless I had no other choice.

After trial and error, I was able to find a pattern that minimized my symptoms to some extent. I believe my symptoms were less than usual because I made the effort to follow a regime. Here are some suggestions I found helpful:

• Avoid foods that are spicy or acidic. Avoid alcoholic beverages and mouthwashes. Minimize caffeine. I limit coffee to one cup in the morning and add cream instead of drinking it black.
• Identify the convenient foods you can eat without difficulty and keep eating them. Don’t try to force foods that aren’t working when something else will work. If oatmeal and Ensure are all you can eat, then eat oatmeal and Ensure.
• Mix sips of water with food when the mouth is dry or you are having trouble swallowing. Swallowing may be more difficult. Sometimes it feels like a lump in the throat that doesn’t want to go down.
• Swallow consciously, with care and attention. If coughing or sticking of food occurs stop until it is controlled, then try again. If persistent, call your doctor. I had little coughing and minimal sticking, but stayed very aware.
• Don’t try to swallow foods of different consistency at the same time. It can help to drop your chin and mix the food in your mouth with water before trying to swallow it.
• I found that foods that were slightly warm were best for me. Some people like cold foods, especially milkshakes, but I couldn’t tolerate ice cream. Experiment, but avoid hot foods like the plague.
• It may be helpful to sip something, like warm tea.

Once treatment was finished, I was anxious to put everything aside and just get stronger. This didn’t happen. Some side effects continued or returned, such as skin dryness and splits, and most significantly mucositis. My theory is (my assumption, not based on medical advice), that the overpowering salty taste and slimy feeling are more acute because my sense of taste is returning, whereas they were masked when I couldn’t taste anything. Nonetheless, I was very tired of it all by then, and just wanted my life back.

Three weeks post therapy, my appetite has not returned, but my taste is starting to come back. Mucositis has turned my gums white and I have a constant unpleasant taste in my mouth. One night the salty taste was so overpowering I couldn’t sleep, and the thought of having to deal with this for months longer seemed impossible. This was an emotional low point for me, the only time I thought I wanted to give up. But things always look their worst while tossing and turning during the night, and in the morning I found a new determination, and it was a better day.

I wish I could sugar-coat these mouth side effects, but I’d be lying if I did. I’m finding them difficult, but not impossible. The thought that mucositis can persist for up to three months or even more after therapy is finished is depressing, but I’ve refused to believe the hard parts of cancer treatment from the very beginning, and perhaps that is a good thing because it’s helped keep me from giving up. I’d rather think I will be back to normal, it’s just around the corner now.

One thing that has helped me through these side effects, appetite, and eating difficulties is that I have never lost the ability to smell nor the desire for food. I don’t avoid thinking about food. I read recipes and see food commercials, remember the tastes, and look forward to enjoying them again. As I write this, although the mucositis prevents me from actually enjoying food, my sense of taste is slowly returning. I can recognize what is in my mouth, and I’m testing little bits of “forbidden” foods each day. Most don’t work yet, but I’m testing anyway.

I’m working toward my first Big Mac. Or lasagna. A glass of wine maybe. Or sitting in a restaurant. It will happen. The desire is there, and where there’s desire there’s a way!