Setback

It would be unrealistic to expect any treatment to progress over a long term without aberration. The human body is a complex organism, and reactions to drug treatments can vary according to how the body responds under ever-changing (however slightly) conditions.

While the Pfizer drug Sutent presents a number of well-documented side effects, their manifestation remains largely unpredictable beyond broad parameters. For example, there is skin soreness. During one cycle an internal blister-like skin sore presented on the side of my left thumb pad. After the treatment cycle, the soreness subsided and the “blister” solidified, sloughed off the surface, and was replaced by new skin with no trace of the problem. During another cycle the same thing happened but the site was side of the pad of my big toe on my left foot. The same sequence of healing occurred. These “blisters” appeared only these two times, however, over the course of several treatment cycles.

During the most recent cycle my right jaw became swollen and a similar growth arose in the corner of my mouth between my cheek and gum near my lower wisdom tooth. In this case it was necessary to delay the start of a new treatment cycle and wait for the jaw swelling to subside, because it had restricted the extent to which I could open my mouth and thus affected eating. I should point out that this area of my jaw was subjected to the intense radiation treatment, which was given as part of a larger treatment regimen for my entire lower jaw and neck area some twenty-two years ago. The eight-week radiation treatment was for a squamous-cell carcinoma that was detected in lymph nodes on the right side of my neck, under my jaw, with an unknown primary.

The jaw swelling was a new side effect; however, I have always felt some tension in that side of my jaw during each Sutent treatment cycle. The blister-like growth is currently subsiding, though differently, I suspect because it is always moist inside my mouth and so cannot resolve in quite the same way as on my thumb or toe.

Side effects that do not directly cause problems can reveal issues that otherwise might lie undiscovered, or they can exacerbate problems that were minor and now require attention. In this case the jaw side effects were sufficiently puzzling to send me to an ENT (ear-nose-throat) specialist, who ordered a sinus CT scan and found a nasal polyp. Another issue that presented itself was a perforated sinus, with a channel opening between my right sinus and an area of gum behind an upper molar. X-rays of the jaw showed no abnormality.

Future ENT and oral surgical appointments lie ahead to address these newly arisen issues. In the meantime I have started a new Sutent cycle that, I hope, does not reveal any new problems.

Side effects are to be expected. That’s a given. Individuals undergoing treatment of this type, however, also should be aware that the unexpected is not merely possible but likely. The aberrations are unpredictable and simply must be dealt with methodically, one by one, as they arise.

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.