Next?

Waiting for just the right time to write a new post didn’t pan out as a productive strategy, so the time is now, right or not. My husband Sam and I spent most of May on a once-in-a-lifetime trip, combining a thirteen-day transatlantic cruise with another ten days split between London and Paris. Needless to say, it was fantastic. I had been taking Afinitor since the previous December. That’s a targeted therapy for my renal cancer. I’d switched to that after the previous drug, Sutent, produced serious side effects—the most significant being necrosis of the jaw where I’d previously had radiation therapy for an unrelated cancer more than twenty years ago.

I had purposely delayed a follow-up CT scan until after the trip, remembering that when I began this cancer journey a year earlier, we’d had to cancel a planned tour of Italy. So in June I had the new CT scan, and the results were mixed. Some tumors had shrunk, some had grown. That was an indication to my oncologist that Afinitor had run its course as an effective treatment. What next?

Progress is continuous in the field of cancer treatment. A year ago—even less—immunotherapy was still making its way through the approval pipeline. Now, fortuitously, it was ready to be used to treat kidney cancer. On August 23 I had my first infusion of the immunotherapy drug Opdivo. Additional infusions would follow every other week. The first infusion was administered on a Tuesday morning. By evening I was running a fever of 101.7 F and aching all over. My fever was slightly lower by bedtime, and the next morning I was feeling relatively normal. Subsequent infusions to date have produced no discernible reaction, thankfully. (That relative stability emboldened me to take my godson on a weeklong trip a couple of states away to visit relatives.)

Unfortunately as this new therapy was getting underway, pain in the area where my left kidney had been removed—now the region of the central tumor, from which the metastases have spread—had begun to increase. Trying to control the pain progressed through several painkillers: Norco, Percocet, and now a combination of a Fentanyl patch and Percocet (7.5-325). The Percocet is for when the patch isn’t enough and is prescribed for every four hours. Most days I need the Percocet around the clock.

This past Friday I woke up experiencing shortness of breath and a sharp, stabbing pain in the left side of my chest. Off to the Emergency Room. After a panoply of tests, the conclusion was that I was developing pneumonia in my left lung. (This was the same day Hillary Clinton was diagnosed with pneumonia. I don’t have anything like her stamina.) I was prescribed an antibiotic and went home. However, as I read about the antibiotic I became concerned about the potential side effects. So on Saturday morning I called my family practice doctor and obtained prescriptions for two antibiotics that I'd previously used without a problem.

On Sunday I was again (still) in distress with shortness of breath, so we went back to the ER. This time, along with other tests, a CT scan was done to rule out a pulmonary embolism (blood clot in the lung). More antibiotics were administered by infusion and, absent any other evidence, the diagnosis of developing pneumonia was held.

On Monday I followed up with a visit to my oncologist, who voiced skepticism about the “developing pneumonia” diagnosis and set in motion a consultation with a pulmonary specialist. That is still in process.

On Tuesday I followed up with my family practice doctor, who ordered lab work to rule out congestive heart failure but speculated that the real cause for shortness of breath may be the increased growth of the cancer, particularly metastases in the left lung. Results for the congestive heart failure were negative.

My oncologist has suggested that, although some increase in some tumors has occurred, it is too early in the Opdivo treatment to conclude that it is not working. But that still leaves the shortness of breath to be addressed. So...next?

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.

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….

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.