Tradeoffs in Here Be Dust

At my most recent Healthy Living class, the facilitator asked me what kept me motivated to meet my weekly goals as well as I have. I smiled, looked her in the eye, and said, “Anger.”

She said, “That was not the answer I was expecting.”

I assured her that this was anger in a good sense. I am angry at cancer. I am angry at the side effects I’m dealing with. My anger drives me to fight against both, determined that I will not let them get to me.

Exacerbation of my carpal tunnel syndrome (which I’ve had since the early 1990s) is one side effect of the anastrazole I’m taking to fight against cancer recurrence. My flare-up on June 28 had been more severe than usual, including pain up to my right elbow and complete numbness in my thumb, index, and middle fingers. (The absence of numbness in my ring and pinky fingers keeps me from calling this neurology of the type that Taxol can cause.)

Notably, this severe flare-up had occurred the day after I had done three hours of weed-whacking and after about ten hours of sleep, before breakfast. The last time it had been this bad had been in January, requiring ibuprofen. Cold weather had always worsened the condition, even before cancer treatment.

My oncologist confirmed that anastrazole can worsen CTS – i.e., this is not just progression of a condition I’ve had for almost a quarter-century. Other side effects I’ve experienced from anastrazole include weight gain (just a few pounds at this point, but in spite of my increased calorie burn from exercise and decreased calorie consumption) and the onset of osteopenia in my right hip (bone density in my left hip and spine remain normal, at least for now). As my direct experience of the side effects go, my worsened CTS ranks highest in its effect on my quality of life.

The June 28 flare-up had lasted for only about a half hour, but some degree of tingling and numbness had continued for the rest of the day. Even raising my arm above my head or to chest height triggers a mild response that worsens until I let my hands rest at my sides.

I next see my oncologist in August, and my list of questions and comments for him already runs close to a page in length. Much has to do with tradeoffs. For example, CTS is also exacerbated by stimulants like coffee, and I had gone off coffee for the duration of my active treatment, mainly to avoid its dehydrating effects. But several studies have shown that caffeinated coffee protects against breast cancer recurrence, so I have resumed my coffee drinking. (I had already noticed CTS exacerbation months before I returned to caffeine.)

Another tradeoff concerns issues of bone density. Since being diagnosed with osteopenia, my focus has been on using weight-bearing exercise to fight against further bone thinning and, ideally, to reverse the bone loss I’ve already experienced. In addition to my regular workouts on a stationary bike, I have been doing Better Bones and Balance workouts three times a week and 30 minutes on a manual treadmill set at a 10-degree incline twice a week, wearing a 5-lb. weighted vest for both the BBB and treadmill sessions. That weight load will increase very gradually. Add in the use of my DIY standing desk for at least two hours a day.

Since my earliest days of reading up on breast cancer, I’ve known that bone-strengthening drugs like bisphosphonates and denosumab can cause severe side effects, like osteonecrosis of the jaw. However, recent research has now shown that these drugs can also help prevent recurrence, including metastasis to the bone, one of the four main pathways (along with liver, lungs, and brain) of breast cancer metastasis. The SWOG clinical trial and a meta-analysis done by the Oxford Group (reported at the recent American Society of Clinical Oncology meeting in Chicago) showed benefits to the use of bisphosphonates in an adjuvant setting. Meta-analysis showed that in post-menopausal women, use of bisphosphonates in an adjuvant setting showed significant reduction in breast cancer bone recurrences and death, with a 20% reduction in deaths.

Meanwhile, the ABCSG18 trial has shown a significant reduction in fracture rate for women on aromatase inhibitors using vs. not using denosumab. These participants were also taking Vitamin D and calcium, as I have been doing ever since I had started on anastrazole. A nurse (who was actually examining my partner at a checkup) suggested that I get my Vitamin D levels checked, so I will ask that it be added to the blood work to be done when I see my oncologist next month. The nurse also recommended bisphosphonates, because the jaw necrosis risk is very small.

Another consideration is that not all studies are created equal, and as a layperson I try to evaluate them to the best of my ability. Are they robust? (Do they have a sufficient number of participants?) Are they valid? (Do they study the same variables that apply to me, or are those variables close enough? Furthermore, do they involve conflicting variables – uncontrollable forces that can affect results?) Are they replicable? (Do the findings hold up, or is this a flash in the pan?) Could the study’s funders present a conflict of interest? (Has a pharmaceutical company funded a study of its own drug?) The American Association for Cancer Research provides a layman’s guide to understanding scientific journal articles. Another useful article is “Odds Are, It’s Wrong,” by Tom Siegfried in Science News.

For example, Siegfried says this about the often-used tool of meta-analysis: “Another concern is the common strategy of combining results from many trials into a single ‘meta-analysis,’ a study of studies. In a single trial with relatively few participants, statistical tests may not detect small but real and possibly important effects. In principle, combining smaller studies to create a larger sample would allow the tests to detect such small effects. But statistical techniques for doing so are valid only if certain criteria are met. For one thing, all the studies conducted on the drug must be included – published and unpublished. And all the studies should have been performed in a similar way, using the same protocols, definitions, types of patients and doses. When combining studies with differences, it is necessary first to show that those differences would not affect the analysis, [biostatistician Steven Goodman of the Johns Hopkins University School of Public Health] notes, but that seldom happens. ‘That’s not a formal part of most meta-analyses,’ he says.”

(One example of “are those variables close enough?” involves my Oncotype-DX score. Oncotype-DX has become a standard test to determine whether someone with ER-positive, node-negative breast cancer would benefit from chemo. I chose to trust my score and my oncologist’s recommendation, but not without reservations. First, the Oncotype-DX scoring system is based on studies that used tamoxifen, not aromatase inhibitors like the anastrazole I’m on, and AIs have been shown to outperform tamoxifen with respect to blocking cancer recurrence. The drugs also use different hormone-blocking mechanisms and involve different toxicities and risks. Second, the Oncotype-DX studies involved a different chemo regime than mine: CMF/MF (Cyclophosphamide, Methotrexate, and Fluorouracil) versus my AC-T (Adriamycin and Cytoxan (Cytoxan is the brand name for Cyclophosphamide) followed by Taxol). When you come down to it, I had chosen to undergo chemo based on studies that had used different drugs for both chemo and endocrine therapy, but those studies continue to drive the current standard of care.)

What happened in the past is chemo under the bridge. For going forward, one thing I want to know is: What are my oncologist’s personal criteria for making treatment decisions based on a study?

In the meantime, I have added a carpal tunnel syndrome flare-up log to my other logs for tracking my treatment side effects and other variables (like my daily water consumption). My table categories include date, time, hand (because I have CTS in both hands, more severe in the right), whether or not I am wearing my wrist brace(s), severity (1=mild tingling, can feel objects, little disruption; 2=moderate tingling and numbness, some disruption (e.g., frequent pauses in activity, need for massage, etc.); 3=severe numbness/pain often up to elbow, can’t feel objects, may need analgesics), whether the flare-up is intermittent or steady, duration of the flare-up, whether the flare-up is position-dependent (e.g., exacerbated when my arm is raised above my head or is at chest height), and comments (such as any unusual activity performed the day before, like my three hours of weed-whacking). This will let me learn my own patterns and will guide me in the direction of any useful behavior changes. It will also let me be more specific in my reports to my oncologist.

After only a week of keeping the log, I have learned that (1) my right hand experiences some tingling 24/7; I have gotten to the point where I just don’t consciously notice it anymore; (2) even just holding a bowl in my left hand will cause tingling, and that’s the hand that’s better off. In fact, the same is true when I hold my 4.7-oz. Kobo Mini while reading in bed; and (3) the CTS is starting to seriously disrupt my sleep on some nights. Daily activities disrupted include but are not limited to writing, typing and other computer activity (I took frequent breaks while composing this entry), food prep (especially cutting), driving, and some forms of exercise.

(I might try again to use my computer’s voice recognition feature. The last time I tried that, my entire sound function vanished, requiring a major reset. What does help is my computer’s touch screen capability. I’m glad I had chosen to go with that after the intersection of chemo steroids and my hydration needs had made me inadvertently drown my old computer last year.)

Feedback from my Healthy Living class is that I shouldn’t hesitate to take analgesics because they help decrease inflammation, so I have started doing that. Normally I would take ibuprofen. However, I have switched to aspirin, because a study done at the VA has linked daily aspirin use to protection against the spread of breast cancer. “The trick, says Dr. Sushanta Banerjee, research director of the Cancer Research Unit at the Kansas City (Mo.) Veterans Affairs Medical Center, is to ensure conditions around cancer stem cells aren’t conducive for reproduction, something aspirin seems able to do.” Similar effects have been shown for other cancers as well. That will be another issue to raise with my oncologist.

For me, the bottom line is how much I can tolerate versus the efficacy (and potential side effects) of alternatives. I’m not ready to cry uncle on anastrazole just yet, but there may come a time when I do. In the meantime, bone-strengthening drugs and potential increases in supplements are on my discussion agenda.

I wear my weight vest. Each weight = 2.5 lbs; the vest accommodates up to 16 weights.