#9 Side Effects of Cancer Treatment – Other than Skin & Mouth

I shuffled into the kitchen in pajamas and robe about 8 am, as usual. “How are you doing this morning, hon?” Chris asked.

“About the same,” I rasped. My reply was unintelligible.

“Huh?” He lifted his head from reading the newspaper and blinked.

I pointed to my throat, shook my head. It was hard to get out more than whisper, but this would get better after I ate breakfast and used my voice.

Today I will discuss some other side effects that can occur with radiation and chemotherapy and my experience. Most of the side effects I experienced were described in the previous two posts and involved my skin and mouth. All else turned out to be minor.

Blood component changes, like anemia and magnesium depletion – Before each chemotherapy infusion my blood was tested to monitor the effects of therapy on my general health. This included a blood count to detect anemia, a comprehensive metabolic panel (to show potential problems involving my electrolytes, glucose, liver, kidneys, and more), the same tests I have with my yearly checkup. If they were abnormal, changes would have been made to my infusion to correct the condition. My tests stayed basically normal. I did not have to get a transfusion or deal with liver, kidney, diabetic, or other problems that can occur.

My magnesium level was also monitored before every infusion. Up to half of patients treated with Cetuximab experience low magnesium, which is needed for healthy heart, muscles, bones and nerves. It controls energy, blood pressure, blood sugar, and other body functions. My magnesium level never got low. If it had, I would have needed an infusion of magnesium prior to my Cetuximab infusion, as it takes too long to build up magnesium orally.

Bowel problems – I suspect almost every person having similar therapy will have some bowel habit changes, if nothing else with consistency and regularity. The trick was to figure it out as soon as possible and do what it takes to reverse bothersome symptoms.

Despite the fact that I faithfully drank eight to ten glasses of water a day, after my first infusion I had constipation. It might have been from the infusion, pain or nausea meds, or because I was eating very little food at that time. Likely it was a combination.

At first I managed constipation with prunes, eating both dried prunes and drinking prune juice daily. It helped but wasn’t enough, so I added a stool softener called Miralax. This is not a laxative, but adds bulk to the stool to make it easier to pass. It tastes a little unpleasant, but not bad. A full dose gave me diarrhea, and then it took a couple of weeks to get that under control. After that I stopped tolerating prunes and used only Miralax. I tried taking it alternate days, but eventually I found that what worked best for me was a half dose taken with dinner every day. I did that throughout therapy and recovery and had no further bowel problems.

Dental problems – During the course of therapy the salivary glands are affected. What saliva I had was very thick, and my mouth got very dry. Not only was this a problem from a comfort and ability-to-eat standpoint, but enzymes in saliva protect teeth from decay, so without saliva decay is more likely.

Before I started treatment I had a dental exam and began using fluoride rinses twice a day. I used fluoride through most of the therapy and recovery, stopping only for a few weeks in the middle of therapy when my mouth symptoms were too severe. Since my recovery is not yet complete, I can’t tell you if there is any decay, but I can say I haven’t noticed any problems.

Near the beginning of treatment I thought I had broken a couple of teeth or jarred a filling out of place because whenever my tongue passed over certain teeth they felt very sharp As it turned out, my tongue was just so sensitive that all tooth surfaces felt sharp. As the sensitivity decreased this went away.

I didn’t see my dentist during therapy and recovery because I had mucositis, and dental work, even cleanings, can cause problems like infection. It will be important to see him as soon as possible once cleared by my oncologist or if a dental issue occurs.

Dizziness, lightheadedness – I have a prior history of repeating bouts of vertigo and I suffer from mild dizziness and lightheadedness most days. I was worried this would escalate during therapy and took steps to prevent it.

I had been doing what I refer to as “dizzy exercises” since I had physical therapy for vertigo a couple of years ago. Once the severe symptoms cleared up, I tended to be lackadaisical about these exercises. I restarted them before therapy and did them religiously. They basically consist of tossing my head from side to side, like shaking my head saying “no,” while fixing my gaze on a spot on the wall. I do this for a minute at least twice a day, more when dizziness increases.

I also drank eight to ten glasses of water a day to prevent dehydration and avoided sudden movements, especially when getting up or lying down. I think this helped. Except for times when I was unusually tired, my dizziness remained under control through therapy and recovery.

General “wellness” – My body was undergoing an onslaught by the cancer as well as the treatment, so I didn’t expect to feel generally well. I didn’t feel as bad as I expected to.

I tried to maintain activity but rested when tired, as I was advised. Before therapy began and for the first month I walked daily on an indoor track for about thirty minutes, about a mile and a quarter. What stopped me was not my energy level but the fact that I developed cracks on my feet and heels and I didn’t want to irritate them further. That was one of the side effects of Cetuximab.

I live in a two-story house, and my energy never got bad enough to make stairs a problem. I found that when I sat for extended periods or napped I felt worse afterward, so I tried to stay busy most of the day. Each day, by late afternoon, rather than fatigue I felt generally unwell, my throat pain increased, and I felt a little nauseous. That was my signal to tone it down, and I would read, watch television, and complete my daily health-maintenance schedule. I usually stayed awake until ten or eleven in the evening, sometimes taking a nap in my chair, then regretting it when I woke up feeling bad.

My guess is that, as with the many changes I was undergoing, this general not-well sensation was a new way of feeling fatigue.

Hair loss – I had hair loss at my hairline, minor on the forehead and moderate at the back of my neck. I don’t think it was noticeable to anyone but me. My hair became coarse and brittle, especially my eyebrows, and my eyelashes got very short. I also had some thinning of hair on my legs and armpits. I did not attempt to shave during therapy and recovery. I was told this could be irritating, but mostly I didn’t because my skin was dry and leathery (snakeskin!) and I thought it would be difficult to do.

Hearing problems – Chemotherapy agents can cause some hearing loss, either temporary or permanent. Cetuximab usually does not do this, but the radiation field for my therapy included parts of the ear, or very close to it. For this reason, I had baseline hearing tests done before therapy. My hearing was good.

About two weeks after therapy I started to have an “underwater” feeling, as if my ears were plugged, followed in the next two days by tenderness and then a clear discharge from my left ear. My ENT was able to see me the same day.

I wanted to tell him we had to stop meeting like this, but I held my tongue. “What’s going on?” I asked instead.

He confirmed that my left ear was inflamed. He explained that my throat and other internal structures were experiencing burns internally similar to what I was seeing on my neck externally, and the swelling and inflammation were affecting my ears. He was concerned with what he saw on exam. I was given an antibiotic and eardrops, and this cleared up after about a week.

I didn’t notice any hearing loss throughout treatment nor during recovery. At this point I can’t say if I will have any hearing loss, because I haven’t been retested yet. I suspect it would be minimal, if at all, because I don’t notice any change.

Infusion or allergic reaction – Some people have allergic or other adverse reactions to chemotherapy, which would usually occur while the infusion was in progress. For this reason Benedryl is often given prior to an infusion. Reactions can be severe. I didn’t have any reactions. The only effects I had were slight lightheadedness and fatigue, except after the first infusion when I had nausea and muscle weakness hours later. After this I was given additional injections through my intravenous line prior to my infusion to prevent nausea. It worked.

Nausea and vomiting – I’m relieved I can say I never vomited during or after treatment! This had been one of the things I feared about chemotherapy, since I experience nausea easily and often, even in normal health. Except for the reaction to my first chemo infusion, I had nausea to some extent almost every day, but it was mild and was easily controlled by the oral medication I was given, which I took only when I thought I needed it. I rarely took more than one pill a day, and some days it was mild or transitory and I didn’t need medication.

Pain – I have already identified a number of conditions that were highly unpleasant and affected the quality of my life, but pain was not a significant factor for me. I suspect I tolerate pain more easily than most people. Which does not mean I don’t have pain, just that it takes a higher level to put me out of commission.

The splits on my fingers and feet could be excruciating, but if I avoided touching them I didn’t have pain—until I forgot and touched them accidentally, which seemed to happen way too often.

There were some days when my throat pain was bad, but really not much worse than with a bad cold. I had pain with swallowing most of the time, but less pain in the morning, and when I swallowed repeatedly, as with eating, it was better. On a scale of 1 to 10, my pain level rarely exceeded 6 and mostly was 4 or below. I took pain meds, but only Tylenol at 7 am and 2 pm, and Norco at bedtime.

The pain from radiation burns was worse, perhaps up to 7 or even higher when I touched the area or it was irritated by clothing. I touched it as little as possible, kept it well moisturized, wore soft fabrics with open necklines, and it was not painful when I did that.

At night I swallowed as little as possible, arranged my body such that the sensitive areas of my hands, feet, or radiation burns weren’t touching the bedding. I took a pain pill at bedtime just in case, and I generally slept well.

My oncologist felt my back and abdomen at each visit for tenderness. Some people have stomach pain, but I didn’t. I imagine this could be a factor for those who have not managed constipation and diarrhea well, that are eating the wrong foods, or that have reactions that involve their liver. I didn’t have any of that.

Since the esophagus and GI tract is lined with tissue that is susceptible to mucositis (see previous post) I did get some chest discomfort from time to time after eating that I attributed to heartburn, likely related to mucositis down into the esophagus. This was also in my radiation field. My pain was rare and mild.

I sometimes had a mild headache of short duration (under an hour).

I didn’t experience any other pain.

Voice changes – I experienced mild laryngitis and hoarseness from about week three of radiation therapy until the completion of radiation therapy. It was worse in the morning and late evening, better in the middle of the day. It was one of the first side effects to go away during the recovery period, and stopped by the second week.

Loss of appetite, difficulty eating and swallowing – I experienced these problems, which will be covered in the next post on Nutrition and Speech Therapy.

Unrelated health conditions – I didn’t get to be my age without developing some existing health issues. I was concerned that they might get out of control, despite continued medication, when my body was subjected to the rigors of cancer treatment. This didn’t happen, except for a minor issue with dryness and crusting in my nose (chronic sinus drainage) that got painful. This was cleared up with an over-the-counter nasal saline spray and Neosporin ointment.

I was able to avoid catching an infection by staying home as much as possible and washing my hands almost compulsively. There were things I would worry about later, like the cataract I knew would soon need surgery and upcoming dental work. I feared my blood pressure would soar, but it was measured regularly and stayed normal on my routine medications. I had a prescription for anxiety, but I didn’t need it after the first few days of treatment.

Whenever I got one of those unsettling events like a skipped heartbeat or jabbing pain somewhere, I put it out of my mind. I didn’t allow anxiety to kick in over imaginary complaints. I just couldn’t believe God would give me a problem on top of the cancer to deal with, especially with all my prayers and those who were praying for me. I must have been right, because all my health conditions stayed in control. (Thanks be to God and to all of you!)

Next post: Support Services: Nutrition and Speech Therapy