Side Effects

After twelve weeks of targeted therapy using the Pfizer drug Sutent, I had a “restaging” CT scan, which happily showed no new tumors, no growth in the existing tumors, and even shrinkage of some existing tumors. In short, the drug has been doing exactly what it was designed to do, and I am happy with the results to date.

Like any drug therapy, of course, the results come at a price, namely, side effects. To summarize for myself as a benchmark but also for readers who may be experiencing similar side effects, I devote this post to a compendium of the side effects I have experienced and how I have dealt and continue to deal with them. Fair warning: There have been quite a few and so this post will be lengthy.

I take Sutent daily for two weeks, then take a rest week, and repeat. During the three-week cycle I can usually count on one-and-a-half to two weeks of feeling few if any side effects. They tend to increase toward the end of the cycle and then last until about halfway through my rest week. After several cycles, this pattern is now reasonably predictable, which is helpful for planning work, travel, and other activity schedules.

Tiredness. A common and noticeable side effect is simply that I tire easily. On days when I’m tired, I moderate activities. Most days I take a rest period after lunch, which on tired days becomes a siesta. Being semi-retired, plus working at home, makes it easy to schedule this type of downtime.

Mouth soreness. Principally my tongue but also my gums become quite sensitive. That demands a switch in diet. No food or drink that is hot, cold, spicy (even mildly), or crunchy. Soups, puddings, applesauce, melty ice cream, and so forth become the order of the day. I have seen reports that some people have had to eliminate caffeine. I haven’t, or at least not entirely, but then I tend to drink only two cups of coffee a day in any case. On sore days I let the coffee (or any hot food or beverage) cool to tepid.

Skin dryness and tenderness. My lips and hands become noticeably dry, and so I use lip balm liberally and slather on Bag Balm as hand cream. When my hands are tender, I avoid spending too much time with them wet (such as washing dishes) and wear gloves for cleaning or gardening. My bamboo-based gardening gloves are a godsend. The dryness, incidentally, extends to the nasal mucosa, which means I get spontaneous nosebleeds. It can be disconcerting to suddenly find oneself dripping blood, but fortunately the nosebleeds are fairly readily stopped. During one cycle the skin of my feet also became tender, but it only happened that one cycle so far. Another issue is that the drug sometimes increases my eczema, which is mostly a minor problem. Fortunately I have a prescription cream that helps relieve it.

Constipation/diarrhea. Initially I was taking Ondansetron as an anti-nausea drug, which was prescribed to be taken one-half hour before the daily Sutent. As I never experienced any nausea at all, I decided to try skipping it. Happily, the Sutent does not produce nausea on its own in my case. The anti-nausea drug, however, made me constipated, and so I took generic Benefiber daily. Sutent on its own, for me, doesn’t produce constipation but something close to its opposite—not full-out diarrhea but loose, occasionally urgent stools. I’m still working to get a good handle on treating the problem, but Benefiber seems to help with this problem as well.

Blood pressure issues. I normally take two prescription drugs to control my high blood pressure, and the second one tends at times to lower my pressure a little too much. While I’m taking Sutent, however, I need to add a third prescription because the targeted therapy drug tends to make my blood pressure run high. Timing when to take or skip the third BP med is a bit of a guessing game. On the whole I prefer to err on the side of having BP readings that are lower rather than higher than normal.

Acidic stomach/esophagus. During the past couple of cycles, eating became rather painful because of excessive sensitivity and acidity. Watching what I eat helps, and so far a few Rolaids have been enough to address the problem, I seldom need to take more than four or five tablets on my worst days. When acidity is running high, I do moderate coffee, opting for about half a cup (tepid) at breakfast and a cooled latte midafternoon. And no alcohol on sensitive days. At other times I can still manage a cocktail in the evening, but light on the alcohol.

Hair issues. The first thing I noticed was that all of the little remaining color in my mustache and goatee disappeared. That doesn’t seem to have happened to the hair on my head; however, that hair does seem to be thinning. I have used a generic form of Rogaine for several years, but it’s never been entirely a winning proposition. So natural thinning may, or may not, be abetted by the targeted therapy drug.

Watery eyes and nose. Sutent tends to make the area around my eyes puffy, especially in the morning. I am prone to tears for no reason at times, and when I eat it’s quite likely that my eyes will weep and my nose will run. Apart from some slight inconvenience, this side effect is merely a nuisance.

Depression. I tend to be somewhat depressive at the best of times; it’s a family characteristic. Mostly it’s manageable and I have only tried anti-depressant medication on two occasions during my life, neither of them in recent years. The cancer drug seems to ramp up any latent depression, but the effect tends to last only for three or four days at a time. During that period I am likely to find myself crying, usually over acts of kindness. It’s odd and embarrassing. But I just put up with the effect and let it pass.

Well, that’s the laundry list. It may be useful in the future for me to look back at this and see whether, or how, things change. For readers, I hope the compendium is somewhat useful. On the whole, my side effects, compared to other reports I’ve read, are fairly light and manageable. I’m certainly grateful for that. And if the drug is successful, then there’s good reason to deal proactively with the side effects.

Laughter

“Laughter is the best medicine.” That’s the saying, and I’ve learned not to underestimate it.

A recent study from Loma Linda University in California measured levels of cortisol, a “stress hormone,” and short-term memory before and after a “humor break,” using subjects in their sixties and seventies. The researchers concluded that just ten or fifteen minutes of laughter a day decreased stress, improved memory, and even burned calories.

Cancer Treatment Centers of America reports that “a growing body of research supports the theory that laughter may have therapeutic value.”

It certainly makes me feel better.

As I progress through treatment cycles, I have become intentional about taking opportunities to laugh. I have found that an hour or so enjoying the company of friends and laughing together is a better pain-reliever than ibuprofen.

Humor and consequently laughter takes me out of myself. For me, such experience verifies studies that have shown that episodes of laughter help reduce pain, decrease stress-related hormones, and boost the immune system.

Some years ago I read about Norman Cousins (1915 – 1990), a writer who also served as a professor of Medical Humanities in the UCLA School of Medicine. Cousins was diagnosed with heart disease and a form perhaps of reactive arthritis. Given little chance of surviving, he treated himself with massive doses of Vitamin C and laughter. According to Cousins, who documented his ailments in the book, Anatomy of an Illness, which was made into a television movie in 1994, “I made the joyous discovery that ten minutes of genuine belly laughter had an anesthetic effect and would give me at least two hours of pain-free sleep.”

Cousins survived much longer than his doctors predicted: ten years after his first heart attack, twenty-six years after his collagen illness, and thirty-six years after his doctors first diagnosed his heart disease.

I take my cue from Cousins and others who have discovered the therapeutic value of laughter. Since I began treatment, I have ended most days with an hour or so of sitcoms, thanks to Netflix. But the best laughter still remains the laughter shared with friends.

Skin

Like most people, I suspect, I take my skin for granted most of the time—until something goes wrong. Isn’t that what we do with most things? We notice when something isn’t right, rather than when something is right. A scrape, a bruise, a sunburn and then we notice our skin.

One side effect of the Sutent targeted therapy I’ve noticed is skin soreness, which particularly affects my mouth, hands, and feet. In my case, the severity also has followed that order. During most cycles my mouth, particularly my tongue and the gum areas around my teeth, get sore to the point that I have to modify my diet. I avoid hot, cold, spicy, and crunchy foods, opting for smooth and tepid. Lukewarm soup, soft meat and vegetables in sauce, soft fruit, pudding, melty ice cream all fill the bill. Fortunately, the mouth soreness resolves during my rest week.

I also deal with dry mouth, an issue of longstanding since radiation therapy 22 years ago. I use a mix of approaches, including Biotene toothpaste and Act mouthwash, both specifically for dry mouth conditions. And I use a prescription fluoride toothpaste at bedtime.

The targeted therapy also affects my nasal passages, making me prone to nosebleeds. The most disconcerting are those that spontaneously begin. Fortunately, they are fairly easy to stop, so they are more of a nuisance than anything else.

The skin of my hands during the last couple of cycles became sensitive and painful, with sore fingertips especially. Slight nail discoloration—a kind of black striping—appeared, most noticeably on one thumbnail. I have tried to be conscientious about using hand cream often, opting for old-fashioned Bag Balm, a salve of lanolin and petroleum originally designed to soothe irritated cow’s udders after milking. Don’t laugh; it works!

During the last cycle, a blister-like “thing” developed under the skin surface of one thumb pad, which was quite painful. During the rest week, it resolved, surfacing like a callus that eventually sloughed off as new skin grew under it.

My feet reacted similarly to my hands, but less so. I noticed that my big toes were a bit raw at the joint folds, which made wearing shoes uncomfortable. Summer weather, however, allowed me to opt for flipflops, which are more comfortable than sandals or shoes because there are fewer places where the footwear actually touches the foot.

Apart from these issues, which were painful and annoying only for about a week or so each cycle, I noticed an uptick in my eczema, which is usually slight but increased during the treatment period. Fortunately, I have a prescription cream that I used to ease the worst outbreaks.

Although I generally don’t give much thought to my skin, I have over the years attended to it with perhaps greater attention than some. I’m pale—a typical redhead in that way—and so I’ve always used face moisturizer and sunscreen. Those habits have served me well, and now I find that I need only increase my attention when skin issues arise. The fact that they do seem to arise as a result of the targeted treatment has made me pay attention to my skin and not take it as much for granted.