Head and Neck Cancer, A Personal Journey – #7 Side Effects of Cancer Treatment – Skin Effects

#7 – Side Effects of Cancer Treatment – Skin

The effect I want from cancer treatment, of course, is a cure. I want all existing cancer and any microscopic seeds traveling through my body gone forever, and good health restored. I am fortunate to live today instead of twenty years ago when the outcome for my type of cancer was not as good. Today squamous cell cancer of the base of the tongue is one of the more curable types of cancer. Non-smokers and cancers that are HPV-related, like mine, have higher survival rates.  But the cancer I have has a tough treatment course.

Both Cetuximab and radiation therapy cause various changes during treatment. These were fully discussed with me before treatment began. Nonetheless I was surprised at how difficult some of the changes were to experience. I could not make the changes go away, but the methods and precautions I followed I’m sure made them more livable.

I was told that both Cetuximab and radiation would cause skin changes. It was many years since I took a degree in biology, but when I read that Cetuximab worked by affecting epidermal growth factor receptors, it made sense to me that skin effects should be expected. The epidermis is the outer layer of tissue that lines organs, membranes, and the skin. It is made up of epithelial tissue, most importantly of squamous cell tissue, and squamous cell cancer is what I have. Cancer treatment kills cancer cells, but some healthy cells are damaged too. It seemed likely that my skin would undergo some changes, and I probably wouldn’t like them.

I am of Irish and Polish descent, born blond with fair skin and blue eyes, and my skin has always been sensitive and burns easily. I knew I had to be even more careful than most people if I didn’t want to suffer.

To prepare, I searched my wardrobe for soft items with low necks and pockets to carry tissue and my cell phone. I wanted to avoid as much irritation, especially around my neck, as possible. I ran my personal laundry and bedding through a second rinse to be sure all soaps were removed. I stopped using liquid cleaners, which are more drying, in favor of a mild bar soap without fragrance or other additives.

I had been advised that my appearance would change and that I would probably not want to make public appearances. I got my hair cut as short as possible so I didn’t need to use hair care products around my sensitive skin and I could style it easily. Also, as I had been told to expect changes to my nails, it was advisable that I avoid potential damage to nail beds from nail polish and possible infection from professional manicures or pedicures. I cut all my nails short in anticipation at the very beginning, so I didn’t have to deal with nail care throughout my therapy, except for creams and occasional filing.

My therapy took place in the winter, so it was impossible to avoid fabric near my neck, but I did my best. I realized I could wear V-neck and low-neck tops backward if it helped to keep the larger areas of rash away from fabric. Of course, the winter also caused more dryness in the house, so I had to deal with that too. To keep my skin and mucous membranes moist, I started using a humidifier at night, placed near my bed. One benefit of treatment in the winter is that it is easier to avoid sunlight, which worsens skin changes.

I have never liked to drink much water, but staying hydrated was too important now. I got a quart-sized drinking container to measure my intake, started from the very beginning, and stayed with it throughout.

I was given skin creams to start proactively to minimize changes. I was told to be sure I removed skin creams two hours prior to radiation treatments, as creams could cause the burns to be worse. I had to avoid creams and jewelry below my eyes to my mid-chest, as the areas between would be radiated. Even Chapstick was a no-no. Mostly I wore only eye make-up.

I had to forgo the hot showers I loved in favor of warm showers, and I had to pat my skin dry instead of rubbing it. I must admit that I rewarded myself with a slightly warmer spray on unaffected parts of my body only for a minute before exiting the shower.

The first side effects I had were skin changes. They began about two weeks into treatment with the tips of my fingers. First I had a painful hangnail, then the skin next to my nail beds started to split. It looked like small paper cuts that would not heal, but was considerably more painful. I found that covering the splits with a bandage stopped the pain, but each took a couple of weeks to resolve, and by then I had more. My oncologist suggested the use of liquid bandage, and that was easier to work with, although each split still lasted a week or more and I usually had two to five going at a time.

The next skin change was extreme dryness, which did not respond to frequent applications of skin lotions. First was my face and hands, then my elbows, tops of my feet, and my ankles. I developed cracks in the creases behind my heels and could no longer wear shoes with backs. My cheeks and chin were bright red and painfully dry.

I found that skin lotions I had been using burned when applied, and changed to a thick cream that was free of alcohol, dyes, fragrances, etc. It was recommended to me by my daughter-in-law, Clare, as suggested by her dermatologist sister-in-law. The brand I used is called Vanicream. It’s not the only one that will work, but it was better than other products and did not burn. I have been told Aquaphor is also good.

My fingertips became furrowed and waxy, not uncomfortable, just strange, like living with thin rubber gloves. I couldn’t grip well, or turn pages, and my iPhone no longer recognized my thumbprint. Things like opening and closing zippers, taking the tops off pill bottles or food containers, and turning lamp switches got hard to do. This continued through the entire course of my therapy and afterward. 

Dry skin, furrows, waxy fingertips, and splits.

The skin on my hands was very dry, thin, and wrinkled. For about a month this was quite uncomfortable, until I remembered an old remedy that dates back to when women wore white cotton gloves regularly. The remedy was to cover the hands with Vaseline at bedtime and sleep in the gloves. I had recently washed some vintage gloves, hoping to get the stains out and take them to an antique shop. When the stains couldn’t be removed, I planned to throw them away, but fortunately, I hadn’t done so yet, and a quick search of the basement found them. I lathered my hands with cream and started wearing gloves whenever possible. It worked wonders and cleared up my hands in less than two weeks. It was so successful, I found myself wearing them during the day. The skin on my hands was so thin that anything that had a sharp edge was painful, and I found I could open containers and even type with them on, which kept my laptop keyboard from getting slimy with cream.

Cetuximab rash and hair loss at hairline.

About week three I developed what is called a “Cetuximab rash” on the back of my neck. I had been told that 90% of patients on Cetuximab develop an acne-like rash on the face, neck, back, chest, or arms, and I had been given steroid and antibiotic creams to treat it when it occurred. I didn’t realize how itchy it would be. Of course, you can’t scratch it, so getting the itching under control required another medication. I was also cautioned not to use hot or cold packs on the rash. Later I developed the rash on my chest, fortunately to a lesser extent. The rash stayed with me throughout treatment. At the same time as the rash I lost hair at my neckline. I did not lose any other hair, but my hair did become brittle, coarse, and dry. By the end of treatment the back of my neck was very raw, red and irritated.

By the last few weeks of infusions I had learned to alleviate these symptoms as much as possible, but then the remaining skin on my body started to claim equal attention. I had been unable to walk in shoes with backs due to sores in the cracks behind my heels, but now the skin on my arms, upper legs, buttocks and back started to roughen and develop a snakeskin or fish scale texture. It wasn’t painful at all, but rubbing my hands over it, it just didn’t feel like me. The writer in me fantasized a transformation into a SuperSnakewoman, or some other Superhero. I wondered what superpowers such a person might have: the ability to sneak up on an opponent unheard, coil around it, and engulf it perhaps. By this time I just threw my hands up at yet another insult, and promised myself I would return to normal soon.

“Snakeskin”
This is my thigh.

Along with this, I started to develop a waxy texture on the bottoms of my feet, similar to what had happened to my fingertips. I got some minor cracking too, and intensified my foot care by adding a foot cream daily. This had to be rubbed into the nails as well, like I do with the hand creams, to minimize nail changes. It had to be done carefully to avoid further cuts on the thin skin of my fingertips, so prone to injury. The other caution was that the waxy texture made it slippery to walk in bare feet.

I hadn’t wanted to believe I had cancer at the very beginning, and I also resisted believing that my side effects would be of real consequence after treatment was over. Surely when treatment was completed the worst was over. I was wrong again—not quite. Radiation effects are cumulative and continue to get worse for a couple of weeks after therapy is done.

Up to this point, my skin changes were all due to chemotherapy, but about two weeks before my last radiation therapy session I started to get radiation burns in the treatment area. This continued to increase in size and severity until weeks after the radiation was done. As of this writing, ten days after finishing radiation therapy, it is still getting worse, but I was told it should begin getting better soon. 

Radiation burns began in last two weeks of radiation therapy.

It looks quite bad, with redness, blistering, itching, and pain. However, it is no worse than a bad sunburn, which most of us have had at one time or another, and I knew I could get through it.

Radiation burns ten days after last radiation therapy treatment.

Like any burn, the area is tender and itchy. I was given a silver ointment to use twice a day that has an antibiotic in it. I also soak the area with a Domoboro-like solution three times a day which has a soothing effect. Between these treatments I put on a thick cream (the one I use is Vanicream) every two hours. I usually add another layer at least once during the night as itching wakes me up.

I’ve had many emails from those of you who have been reading my posts, telling me how brave I am. I don’t think of myself as brave. I’m just someone who wants to live, and I want to do whatever it takes to increase those odds. I want not only a successful arrival of my journey, but to make the difficult trip as easy as it can be. I hope my words and the photos do not discourage anyone, but rather that other cancer patients and those who love them understand what needs to be faced and are inspired to keep up the effort.