Head and Neck Cancer: A Personal Journey #3 – Cancer Treatment Begins – The First Two Days

On January 2, my husband, Chris, drove me to Rush University Medical Center for minor surgery, an exam under anesthesia and biopsy. I was not very nervous. The surgery was a minor one, and I had had some surgeries under conscious sedation in recent years. I thought it would be a similar, non-stressful, experience. I expected a sore throat afterwards, but general anesthesia is done with intubation, and I completely underestimated the postop effects.

The reason for the surgery was to get detailed information about the primary lesion (tumor) at the base of my tongue, which would be used to confirm my diagnosis and to get detailed pathological information as well as gross description and location to be used in planning my therapy.

When I awoke from anesthesia, I was astonished by the amount of secretions that kept accumulating in my mouth. I had to grab another tissue to remove them as soon as I put one down. There was no significant pain, but the secretions were quite unpleasant. This went on for two to three hours. When it finally diminished I was brought some apple juice and I drank it easily, in fact, I asked for a second. I left the hospital at about 4:00 pm. That evening I was able to eat a small omelet. I had sharp pain on swallowing and a sore throat, but it was not awful, and I was able to take my medications (pills and capsules) without difficulty.

The sore throat lasted about two weeks, and during that time, although swallowing was uncomfortable, it was not painful. I did experience loss of appetite. It was almost two weeks before the throat discomfort went away, and it was probably due more to the intubation than the biopsy. I lost five more pounds during this time, on top of the five pounds I lost when I was stressing over my diagnosis.

The day after the biopsy, January 3, I was back at the hospital for a radiation simulation and staging and for my first chemotherapy infusion. It was going to be a full day. Dolly, my oncologist daughter-in-law, suggested I eat something substantial for breakfast, like oatmeal. It was a challenge, but I got it down.

I reported to the oncology department and signed in. My baseline laboratory tests had been taken the day I had my treatment conference before the holidays, but for future infusions I would start with a laboratory draw. Some of the effects of treatment involve anemia, low magnesium, and other changes that need to be measured before an infusion is given.

Still concerned about catching an infection, I seated myself as far away as possible from others in the room. I eyed the masks available at check-in. I had been told I could wear one if I wanted to, but didn’t need to wear one unless I was sick.

As I waited to see my oncologist, I studied the crowded waiting area. I estimated the room seated about 75 people, and most of the seats were occupied. I studied the people, sorting out patients from those that accompanied them. A couple of patients were in wheelchairs, others had walkers, but most were ambulatory and getting around normally. A few slumped in their wheelchairs, and one woman curled up on her side on a sofa, clearly not feeling well. Those who looked obviously ill were in the minority. Few wore hats, none had the obvious rash I had been told to expect, and only a few wore masks.

I leaned over to whisper to Chris. “There are really a lot of people here, but most don’t look too bad off. Is that a good sign?”

Soon an assistant came out and called my number. Medical privacy rules prohibit the use of names. I was taken to an exam room where a staff member took my weight, temperature, oxygen and blood pressure. These factors would be used to determine and mix my chemotherapy dose for the day.

Cetuximab is not actually a chemotherapy agent, but a monoclonal antibody that works with the immune system to kill cancer cells. It is recommended only for very specific cancers: primarily metastatic colorectal cancer and squamous cell cancers of the head and neck like mine.

My oncologist’s nurse practitioner and the clinical coordinator came in and introduced themselves. They reviewed a patient handbook with me that explained such matters as who would be involved in my care and how to reach them, what the infusion experience would be like, known side effects, and more. I tried to listen to everything, but my primary concern at that time was side effects. I had a few personal fears.

Since my tumor was at the base of my tongue, I was particularly apprehensive about my ability to swallow. My mother, a stroke survivor, developed inability to swallow late in life and spent a number of years on a feeding tube, during which time my husband Chris and I were her caregivers. I wanted to do everything possible to avoid a feeding tube.

I knew that to avoid the tube I would have to be religious with mouth care, swallowing exercises, and nutrition. I couldn’t lose too much weight, but I had had little appetite since I discovered my swollen node and had lost weight already. Other factors, like changes in taste and dry mouth, would be likely to make this worse. But I was determined from the beginning to do everything I was told to do. I will be giving more detail in future posts.

Nausea was another big concern for me. I dreaded the thought of living with nausea for months, as I thought would happen with chemotherapy. I get nauseous for the most minor reasons. What was going to happen when my body went to war with my disease?

My oncologist then examined me and answered all my questions. She was smiling. Things looked optimistic. “You’re going to do well,” she said. I was given prescriptions for an anticipated skin rash, an antibiotic, and anti-nausea medication that I sincerely hoped would be effective, or better yet, not needed.

I was then sent to another building for radiation staging. Again, I met first with a nurse and then with the radiation oncologist. The nurse gave me a handout that explained radiation side effects and what to do about them. Some of these were skin changes, changes in taste, mouth sores, dry mouth, decreased appetite, and fatigue. I was given a bottle of medication to begin to treat my mouth preventatively, and a skin lotion.

My radiation oncologist then came in and answered all my questions, I was taken to the treatment room and introduced to my radiation therapy team, my CT machine, and my mask.

I will be devoting an entire post to the radiation therapy process, so I will be brief here. To protect vital neck structures not involved in my cancer, it is extremely important that I stay motionless while the radiation is delivered to specific disease locations. This avoids harming as much normal tissue as possible. I had to wear a mask during the process to immobilize me.

During this visit a mask would be made for me, a baseline CT scan would be done, and the target areas would then be calculated and programmed into the system that would deliver the radiation. I would not receive any radiation today, and it would take about a week for my radiation oncologist, radiation dosimetrists, and radiation physicists to program the radiation delivery.

I was asked to lay in the scanner, and a warm, flexible sheet of plastic mesh was laid over my face. Staff held me in place and formed the mask to fit tightly around my face, neck, and shoulders. The mask was surprisingly tight, but it was not a bad experience.

After all necessary information was gathered and my mask was made, I was sent back to Medical Oncology for my first infusion.

The first infusion is called a “loading dose,” and is double the normal dose I would receive on subsequent infusions. Cetuximab stays in the body for about a week, but this also means it takes longer to reach therapeutic levels. For this reason a larger dose is given to start at the desired level. The infusion was going to take about three hours on top of what had already been a long day.

I was seated comfortably in a reclining chemo chair, offered and welcomed a warm blanket, and an intravenous cannula was inserted into my arm. The only discomfort was a slight prick when my skin was punctured, and a little discomfort from the tiny flexible tube that remained in my vein. This was done without difficulty, and I was given an injection through the IV of Benadryl, to prevent possible allergic reactions. After waiting thirty minutes for the Benadryl to take effect, the intravenous drip of Cetuximab was started. I felt nothing.

Relaxing in the chair, I sent Chris to have lunch and to get me some yogurt at the hospital cafeteria. As the Cetuximab dripped slowly into me over the next two hours, I sat comfortably and read a book on my Kindle. After this, I was sent home, tired and a bit fuzzy from the long and stressful day, but otherwise fine. Once home, I had a light dinner and took my evening medications without problem.

I awoke at 2 am that morning with a headache, extreme muscle weakness, and nausea. Yes, the dreaded nausea. I took a Tylenol for the pain, choosing to avoid the pain pill I had been given that also sometimes produces nausea, got up, and sat in a chair. I have found in the past that sitting close to upright minimizes my nausea after a couple of hours and allows me to escape vomiting. The technique worked, the muscle weakness went away soon, and then the headache calmed with the Tylenol. About 4 am I was able to return to bed and sleep, but in the morning my nausea returned. I filled my prescription for nausea medication and began taking it. It worked.

I stayed in bed most of the next day, taking Zofran for nausea and Tylenol for headache and drinking Ensure, which I was able to keep down. When my son, Bob, called from Indiana to check on me, he urged me to get out of bed. By 7 pm I was able to get up and watch television for a couple of hours before going to bed for the night.

The following day I ate small meals and ran a couple of errands outside the house. By this time my headache was mild. I realized that a Scopolamine patch that had been placed behind my ear by anesthesia during my surgery could be contributing to my nausea and some lightheadedness I had been feeling, and I removed it. I continued to improve.

By January 6, four days after surgery and three days after my first infusion, I had no headache or nausea, more energy, and a little appetite was returning.

All in all, I wasn’t in a bad spot. I had a potentially-curable cancer, great doctors, caring and supportive family and friends, I had been given a treatment option that avoided extensive and risky surgery, and the situation looked bright. I just had to push myself through any unpleasantness that developed during the next three months. I could do this!

Next week: Radiation Therapy