This is a story, My Father’s Passport, from the New York Times (may be behind a paywall for some) set in 2003, only 2 years before I was diagnosed with chronic lymphocytic leukemia, an incurable cancer, where no treatment had been shown to offer a survival advantage over doing nothing, let alone offer the possibility of a cure.
No treatment for CLL would be shown to add a minute to one’s life until several years later when the German research group presented data at an American Society of Hematology ASH annual meeting that proved FCR improved overall survival.
Reading between the lines, the NYT article is likely referencing that very same FCR (fludarabine, cyclophosphamide, and rituximab). That is relevant because, since then we have learned that FCR only helps a small minority of CLL patients with very particular prognostic markers and it should generally be avoided in those older than 65 years of age because of the high risk of infections and other complications in that population.
Though hardly the main teaching from this most human story, it reminds us that in 2003 as in 2020, the importance to many of a CLL expert on our team for getting our best possible care.
This story also makes clear just how far we’ve come, but we know that we still have more work to do.
Today we have both better choices than FCR and more choices, but CLL remains largely incurable and some of us may come to a similar fork in the road, as did the father in this story.
Choices about life and death are never easy, but it is good to plan ahead. It is smart to have that plan in writing. Please avail yourselves of all the resources we have made accessible in our planning ahead section of the website.
If you are still procrastinating, please consider why.
As a physician, I was trained to help prolong living, not dying. I hope you enjoy this instructive and powerful New York Times story as much as I did, and that you also take a moment, as I did, to reflect on just how far we have come in such a short time so that stories such as this are being increasingly kicked way down the road.
Still, every one of us gets the same final stamp on our passport.
Please enjoy this good read from the NYT: My Father’s Passport
Stay strong. We are all in this together.
Originally published in The CLL Society Tribune Q1 2020.