Once the cancer was diagnosed, I started to look for every piece of information that is related to his
specific kind of cancer. It took a while for all genetic tests of the tumor to come back, but we were informed quite fast that he was dealing with a mutation in the EGFR gene—epidermal growth factor receptor, for those of you interested in better acquaintance with complicated initials.
A quick Google search and some initial thoughts from the first oncologist gave us lots of hope. This is a well-known mutation, and there is a very good biological treatment for that, a medicine that had FDA approval. What could be better than that? Nothing. It got worse.
Further genetic analysis revealed that it wasn’t merely EGFR, which would be “easier to manage”. Rather, there was a hidden child to this mutation, namely exon 20 insertion. Let me elaborate on that a bit. EGFR exon 20 insertion (ex20-ins) mutations are an uncommon and heterogeneous group of non-small-cell lung cancers (NSCLCs), resistant to conventional EGFR tyrosine kinase inhibitors (TKIs) (A good tip: PubMed is a great source of information).
In simple words: the dream of classical medicine has puffed away. We’re dealing here with something resistant to certain drugs… Ah… sounds like a big war is ahead. Gray clouds of resistance obscured the sunny sky we still had in mind.
OK, so here we are, stuck with some nasty mutation, and reading a bit about it I quickly realized that there are clinical trials in which they test some recently developed drugs for ex20-ins. Great, some light at the end of the tunnel.
And here’s another tip for a great source of information on clinical trials all over the world: https://clinicaltrials.gov/. Anyone can search here for any clinical trial related to many cancer types, and read about interesting trials in the US, all over Europe, Israel, and many other great places that we wanted to visit. Knowing ourselves, and mainly my husband who loved traveling (for both work and pleasure), we started to imagine our trips to nice countries, not focusing on the hospital part in our thoughts.
Some people have private insurance which covers treatments abroad. To my understanding, once
joining a trial (and there are prerequisites for that as well), the organizer of the trial covers all your
scans, checks, etc. The issue is that they don’t cover your flights, hotels, or cases in which you get
sick and need to be hospitalized. So, we started to realize that there are some risks in traveling
abroad, but we ended up soon with a very comprehensive answer: Covid. NO FLIGHTS.
And if I may, a few more words on the articles and trials mentioned: They usually present life spans
of the patients. It ranges between very few months to more, and data about survivals and deaths from the trial. Seeing this is a pure source of depression at first glance. Hey, you’re boasting your great drugs and people live no longer than 3 months? 6 months? Are you kidding me? We want him to live years longer and you’re talking of months? It took me a while to understand that sometimes even a few months count, but beyond that: in these few months new drugs can appear, new treatments, and new ideas. No one knows the future, even when written black on white.
And indeed, since diagnosis, at least 4 new drugs were developed, and some even succeeded
to get FDA approval within a very short period. In other words, even when you read something bad, do not always believe it or jump to conclusions: anything can happen the next day, or week, or month. Shit happens, but sometimes also good stuff, and since no one can predict, let’s at least hope for the positive sides.
And if I may, a small paraphrase on R.L. Stevenson: “Our business in life is not to succeed, but
to continue to fail in good spirits.” I would say our goal with cancer is to do our best to succeed, but even if we fail, do our best to do it with optimism.