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The Tortures of Tamoxifen, Part 1

I’ve been cancer-free for five years now, but I am still technically in maintenance treatment courtesy of my daily dose of tamoxifen. Tamoxifen is a systemic (whole body) form of treatment that is meant to kill off any breast cancer cells by blocking their ability to take in estrogen. It’s a standard prescription for pre-menopausal women whose breast cancer was hormone-receptor positive.

Typically taken for five years, tamoxifen brings with it a lengthy and daunting list of side effects. These range from serious—a heightened risk of uterine cancer and blood clots—to the minor and more common, which include weight gain, muscle/bone/joint pain, and hot flashes.

The minor ones seem pretty benign when you first read them, as if they might be mildly inconvenient and innocuously unpleasant. As a total package they sound a lot like menopause, which is something that every woman eventually goes through, right?

Except that tamoxifen treatment is like menopause on steroids, and those side effects are rip-roaring, intensified versions of their former selves. And their impact can be cumulative, worsening over time and creating new problems, such as chronic fatigue.

The average menopausal woman who experiences severity in her symptoms has options for relief, such as over-the-counter dietary supplements or a doctor-prescribed short-term course of estrogen therapy. The tamoxifen taker has no such luck, as every potential mediator involves estrogen in some form, the very thing tamoxifen is meant to mop up.

I started my course of tamoxifen a few months after I finished chemo and radiation. The break was carefully calculated by my oncologist in order to allow my body to recover. I filled my prescription, read the instructions, and planned my dose for bedtime, as nausea and stomach upset were on the list of user-reported side effects.

The first (and almost instantaneous) change in my body's chemistry was weight gain. I’d always been diligent about exercise and had maintained a stable weight, outside of pregnancy. Less than a month into tamoxifen treatment, my face looked puffy and my pants felt tight. The scale confirmed that I’d gained five pounds.

My body just didn’t seem to burn off simple carbs anymore. When I indulged, starches and sugars were almost immediately stored on my lower body as fat. I quickly realized that I’d have to eat much cleaner—lots of lean protein, vegetables, and smaller amounts of fruit—and strictly limit my carb intake just to maintain the status quo.

I also developed the aforementioned bone and joint pain. I winced when I set foot on the floor every morning and felt aches in places that I didn’t know had bones. I moved with the stiff gait of a hundred-year-old tortoise until everything warmed up.

When I sat on the floor for too long, I had trouble getting back up. If I didn’t change positions frequently, my joints were uncooperative when I try to get moving again. And when I spent too much time on my feet, I suffered through a sleepless night of aching hips and throbbing knees.

But by far the most egregious side effect was hot flashes. My hot flashes were not—as their name implied—quick bursts of heat. No, they were feverish fifteen minute endurance intervals triggered by a whole host of factors. Heat and humidity, caffeine, exertion, sleep, emotion—you name it, I had a hot flash for it.

Each hot flash started as a feeling of warmth, usually in my torso, that picked up steam and radiated heat throughout the rest of my body. By mid-hot flash, I was in a head-to-toe flop sweat with my body's attempt to cool itself, every pore dripping like a leaky faucet. By the end, I felt like I’d been through a ringer (and my soaked clothing could have used one.)

I repeated this process a minimum of 8-10 times during my waking hours and another 3-5 times per night. The disruption caused by alternately kicking off blankets and pulling them up to my chin damaged my slumber as much as breast-feeding a newborn did. I was mentally fuzzy and foggy, operating on a perpetual sleep deficit.

When I mentioned the negative impact of these symptoms on my quality of life to my oncologist, she nodded knowingly. Apparently chronic, persistent fatigue was another commonly described side effect of tamoxifen.  

Being of sound medical mind, she had a pharmaceutical solution in her arsenal. A mild antidepressant had been proven, to a certain degree, effective in combating some of the side effects of tamoxifen. She could prescribe one for me on a trial basis to see if it would work as an antidote to my misery.

My inherent resistance to blindly swallowing the promises made by money-making drug companies raised its hackles. If relief from my symptoms was predicated upon the addition of another powerful pharmaceutical to my already burdened body, I reasoned that it would be simpler to just stop taking tamoxifen.

To be continued…

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