New Side Effects

For readers who follow this blog, I mentioned in the previous post (“Attitude,” December 10) that I have switched to the targeted therapy drug Afinitor, or Everolimus. I’m now closing in on four weeks on this regimen. As I said in that earlier post, the side effects have been fairly minimal, which is good because unlike taking Sutent, with Afinitor there’s no “rest” week between cycles.

Google side effects and you can find various lists. From those lists, here’s what I’ve experienced so far:

More common

•   abdominal or stomach pain, usually minor

•   change in taste, slightly less aware of sugar or salt

•   dry skin, but I had that before, especially in the winter

•   pain in the arms or legs, read joint and muscle pain, particularly joint, as if the drug intensifies arthritic pain somewhat

•   unable to sleep, which given that I struggle with insomnia has been one of the more annoying side effects

Less common

•   back pain, especially lower back

•   bumps on the skin, read pimples (do I really need to revisit my teen years?)

•   passing gas, always a treat as one ages anyway, it seems

Among the “not noted” is dizziness, which I can only attribute to the Afinitor, though who knows, really? I woke up one recent morning feeling like a drunken sailor and proceeded to reel about the house for a couple of hours until that sensation passed away. It only happened once—so far.

This morning there was a new side effect, which wasn’t entirely attributable to Afinitor. About 1:00 a.m. I awoke to the sensation that my upper lip was swollen on the right side. I’d bitten my inner lip during dinner the previous evening, and so I initially thought it was possibly a reaction to that, exacerbated by the Indian food we ate. I iced the lip only to find that the swelling then spread across my entire upper lip. (People pay good money for collagen treatments that have this effect!)

By 7:00 with no resolution in sight I was sufficiently concerned to go to the hospital emergency room. The doctors concluded that the swelling was a side effect of one of my blood-pressure drugs, Lisinopril. Apparently this effect is well-documented and can occur even after taking this drug, as I have done, for a number of years. However, taking Afinitor is known to increase the probability that this side effect will occur. Two hours later I emerged from the ER, having been given Benadryl and Prednisone and a new blood-pressure prescription (Losartan). Over the course of the day the swelling substantially subsided and by bedtime my upper lip was pretty well back to normal.

Again, for the most part the side effects I’ve experienced with Afinitor have been fairly mild. On the plus side, I have been able to decrease the amount of narcotic painkiller I need to take, which I regard as a signal that the Afinitor is having the desired effect on the cancer tumors.

Attitude

How does one live as though life will go on forever and, simultaneously, as if death awaits tomorrow? I ponder this question fairly often. The positions seem to be opposites, but actually both are facts of life for everyone. After all, neither is a certainty. No one lives forever, but it is self-defeating to live on the verge of death. Equally, except in rare cases and barring the unforeseen, most of us aren’t going to die tomorrow.

The diagnosis of a potentially fatal disease can quicken appreciation of the here and now. Today. Carpe diem, as the saying goes. That’s my answer to the question. It’s easy to get caught up in the grind of daily life and forget to step back and view each day through a longer lens and be grateful for the opportunity to live it. Some days the knowledge that my body is fighting cancer hangs over me like a storm cloud, poised to drench me in despair. I have a family tendency toward depression at the best of times, and such feelings can be hard to shake.

Readers who follow this blog may recall that I developed problems related to the targeted therapy drug Sutent, which I had taken since last spring but had to discontinue it a few weeks ago. I recently completed the first week on another targeted therapy drug called Afinitor. So far, the side effects have been fairly minimal; however, two have been irritating. One is that this drug increases my insomnia. Most of my adult life I’ve struggled with what is often termed “early rising insomnia.” I fall asleep readily enough but have difficulty staying asleep. Several of the days during this first week on Afinitor I have turned in about my usual time of 11:00 p.m. only to awaken around 3:30 or 4:00 a.m. to find it difficult if not impossible to fall back to sleep.

Another effect has been nervousness. Several days my nerves tingled for much of the day, which also made me aware that this drug tends to bring out minor muscle and joint aches. But it’s the jitteriness that is most annoying. Both that and the insomnia increase depression and lead to irritation and impatience, which I struggle to contain. Add in the cancer pain, managed (sometimes only barely) with a generic version of Percocet, and it can be challenging to step back and appreciate any given day. I like to turn that storm cloud overhead into an umbrella, but it’s not easy.

Three things help. First, being active. I try as best I can to set aside the pain, the jitteriness, the fatigue, and all the rest and just get on with living. Whether it’s writing, baking, painting, shopping, or some other activity, I find that doing something invariably feels better than doing nothing. Second, and just the opposite, purposefully doing nothing also can provide relief. Meditation, mild exercise, yoga—all turn the mind purposefully inward. Finally, being with family and friends, talking and laughing together, provides relief. All three of these things are distractors, of course. Dwelling on problems, fretting, projecting negatively about the future—these in themselves increase the awareness of pain and nervousness. Healthy distractions provide relief. This is something I’ve written about in earlier posts, but as I begin taking this new drug I needed to refresh my memory.