I knew that I would not stay on chemotherapy forever. So getting to the point where I ended my “chemo journey” was not completely surprising. In fact, I had anticipated that a change would be good for some time — after over 2 1/2 years of the same routine, not only had it begun to gnaw at me each time I faced another infusion and ensuing side effects, but there was something of a “gut feeling” that the chemotherapy drug I had been on for so long had done about all it could do. I was probably influenced a lot by the promise of Immunotherapy drugs that had become the media darlings of the cancer world. When my oncologist said it was a good time to consider another approach, I was eager to do it.
Besides immunotherapy, for which I had hoped to join a clinical trial, there was the possibility that I might harbor an actionable gene mutation for my adenocarcinoma. My initial genetic analysis from a biopsy prior to starting chemo had shown none of the mutations that were being directly treated at that time. But a couple of years makes a big difference in the cancer world, especially with the increasing rate of progress science has been making over the past few decades. A re-analysis of that old biopsy showed nothing new, but a quick, painless liquid biopsy — two simple tubes of blood and fifteen minutes of my time — revealed that I harbor a fairly rare mutation, one that affects roughly two percent of the adenocarcinoma subset of lung cancer patients: ErbB2, also known as HER2.
This shifted gears for me regarding the drive down my treatment path. It also made me shift perspective. There is the question, now, of whether finding myself in such a cancer minority is a sign of good fortune. On one hand, it means that my genetic demographic is not highly studied — the downside to minority group patients is simply that there are fewer of us to put into clinical trials. Flip that over, however, and it makes the trials that have been done highly specific — and it makes the case studies on patients with this mutation also highly specific. Which in turn suggests that this might be a very positive development after all.
The mutation in and of itself highlights the fact that every patient and therefore every cancer is unique. This also translates to how patients respond to treatment and handle side effects. I will be taking a drug called afatinib, which is one of the best-studied agents used against the related and much more common EGFR (ErbB1) gene mutation. Of course, the first thing that I researched was what sorts of side effects I would expect with this therapy.
My oncologist had long-since warned me that, whatever treatment option I moved to, in most likelihood, I would experience worse side effects than I had on chemotherapy. This is not because other treatments are typically harder, but rather due to my unusual tolerance of chemo. Make no mistake, chemotherapy was difficult, but I avoided the hair loss and the vomiting and the weight loss and probably a few other symptoms that patients frequently suffer through, though I certainly had my share of annoyances and dealing with issues both physical and emotional. Beyond the physical difficulties and the near-dystopian feel of the endless cycles of needles and drips, I was just plain tired. And, truthfully, I have wanted to leap out of that frying pan for a long time.
But will the fire I land in burn more or less? It is impossible to know until I am already engulfed in the flames. There are side effects that I avoided on chemo, like mouth sores, which I am almost assuredly going to have when this new therapy begins. I have been antagonized for a long, long time now by deeply embedded acne that comes and goes throughout different areas on my body, and the single most common side effect of afatinib seems to be an acne-like rash. But even worse is the threat of diarrhea as a constant in my life, to the point where it was suggested that a Costco membership would be highly relevant just for stocking up on Imodium.
At least Imodium exists — so that side effect can be treated if it occurs (and I am all but promised that it will). And there is a common and effective antibiotic ready to target the acne-like rash. The mouth sores, at least, are supposed to ease up on their own after I acclimate to the medication. So maybe the side effects will be worse in some ways than what I dealt with during chemo, but it seems that there are drugs to make them more tolerable. Perhaps the fire will be less painful than the pan after all.
And there is one major bonus that I have not mentioned: afatinib comes in a pill. Sure, I’ll be popping pills every day for as long as this works, but that means fewer trips to the clinic and, more importantly, a chance for my veins to catch a break. Two weeks ago I was talking to a patient and a nurse about the process of getting a port and the advantages of it offered; today I am taking a deep breath and just feeling glad that I won’t be sitting around with a tube stuck in my vein, hopefully for a long, long time.
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