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.

Limbo

For several weeks I have been in limbo, having discontinued of necessity taking Sutent, the Pfizer targeted therapy for my renal cancer, and waiting for the uniquely American rigmarole of Big Pharma to resolve with the hope of switching to a different targeted therapy, probably Afinitor, a Novartis product. Cancer drugs are extremely expensive and so support to make them affordable is essential even when one has prescription insurance.

The combination of Sutent and a history of radiation that was used some twenty-two years ago to treat squamous cell carcinoma produced some jawbone necrosis. A month-long pause in the targeted therapy treatment proved insufficient and so Sutent needed to be discontinued altogether. Targeted therapies target different aspects of cancerous tumors. Afinitor seems less likely to exacerbate the jaw issues. But all treatments are to some extent “experimental,” whether it’s aspirin or a cancer drug. Individuals react in different ways to various chemicals, and the reactions are only predictable to a certain degree.

The Sutent side effect led to a number of dental problems, multiple consultations with an oral surgeon, and two rounds of antibiotics to resolve (not completely but substantially) tissue swelling that severely restricted jaw movement and reduced the extent to which I could open my mouth. Eating was compromised, meaning that for several weeks I could manage only liquids or semi-liquids (yogurt, for example).

During the period after I discontinued taking Sutent, the back/side pain that had been the tipoff that my renal cancer of seventeen years ago had returned also came back. Early on—several months ago—I had been prescribed hydrocodone-acetaminophen (Norco) for the pain and took it on an as-needed basis. While I was taking Sutent the pain went away completely. Unfortunately I found that I need a painkiller regularly during this limbo period. A couple of weeks ago Norco ceased to provide relief. It simply stopped working. Consequently I was prescribed oxycodone-acetaminophen (Percocet), also on an as-needed basis. But I’ve had to use it regularly and recently even shortened the six-hour interval to five in order to manage the pain effectively.

Pain can be severely limiting, not only physically but mentally. Pain is a distraction. It draws attention away from other things and to itself, making it hard to concentrate on reading, writing, or doing routine activities. At its best Norco and now Percocet simply reduces the pain to a manageable level; the drug doesn’t provide complete pain-free relief. But at that manageable level, other things—distractions ranging from watching television or a movie or talking to friends to meditating or doing modified yoga—complete the relief process. In other words, keeping busy serves as a supplemental, non-chemical painkiller.

During this period of limbo I am doing my utmost to keep busy in productive, fulfilling ways. The next phase of treatment has yet to begin and so this post must be a kind of cliffhanger. To be continued….

Hair

Most chemical treatments for cancer affect the patient’s hair in some way. It’s a tradeoff for the beneficial effects of the treatment.

Before and After

In my case I had arrived at the age of 67 with a relatively full head of hair, if rather more sparse than in younger days, and with a good deal of the original color remaining. After six months of treatment with the Pfizer targeted therapy drug Sutent for my renal cancer, most of that remaining hair color has vanished and my hair is somewhat sparser, both on my head and everywhere else.

I suspect that most people who undergo this type of treatment find this particular side effect to be psychologically aging and, perhaps, consequently difficult to deal with. When I look in the mirror, I remind myself that the cancer is not aging me—or giving me the appearance of aging—but, rather, the treatment is doing so. The treatment, however, is keeping the cancer in check and allowing me to live longer and to go about living most days in relative normality.

What’s the old saying: Just because there’s snow on the roof doesn’t mean there isn’t still a fire in the furnace? Acquiring a “snowy roof” is not a bad tradeoff, considering the alternative.

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.