As a fellow, I was asked by my then-division chief to
see a young woman in consultation for leukocytosis.
He had come to know of her through a colleague and
reasoned that my upcoming clinic was probably the quickest way for her to be
seen.
That year, I had seen many patients with leukopenia,
leukocytosis, anemia, thrombocytopenia or, sometimes, combinations of the
above. Most didn’t harbor serious underlying hematological disorders, and
many I met for one time only.
At first, this particular patient seemed no different.
She was healthy and active, with just a modest neutrophilic elevation in her
white blood cell count. Further questioning, though, revealed some subtle
— and to her, not-so-subtle — historical symptoms, including
unexplained fatigue, vague left-sided abdominal discomfort, and a feeling that
something wasn’t quite right. She turned out to have a diagnosis of
chronic myelogenous leukemia.
CML represents one of the great success stories in
modern oncology. A once-invariably fatal disease has been transformed into a
chronic illness, one that some individuals can experience entirely without
symptoms. Mathematical models suggest a normal life expectancy for many.
As detailed in The Emperor of all Maladies: A
Biography of Cancer by Siddhartha Mukherjee and many other accounts,
this story of heroism reached its intellectual culmination in the development
and testing of a miraculous new drug, imatinib (Gleevec, Novartis). This oral
tyrosine kinase inhibitor, and its new second- and third-generation cousins,
has revolutionized the treatment of patients with this disease.
The clinical care of these patients, on the surface, has
become fairly straightforward. Many providers find that the more difficult
decisions center on which TKI to start, how to monitor and characterize
“success” by hematologic, cytogenetic and molecular milestones, and
what to do if resistance develops. Many patients are managed on relative
autopilot, though, once treatment is started.
From the patient’s perspective, the experience of
being diagnosed with CML and starting a TKI, no matter how straightforward or
successful this might seem from the provider’s standpoint, is a terrifying
proposition. A cancer diagnosis — no matter which kind — is
life-altering, especially to patients in their late 20s or early 30s.
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William
Wood
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As I grew to know this patient over the years, we
struggled with many important patient-centered issues. We talked about the
biologic meaning of a CML diagnosis and what made a treatment such as imatinib
successful. We discussed the confusing concept of how “curative”
treatments in the past were fraught with morbidity and risk (eg, stem cell
transplantation), while the miracle of imatinib did not mean “cure”
— and that the disease, ever-lurking, would manifest itself once more if
the medication were to be stopped.
In the early months, we dealt with side effects related
to the drug, the most troublesome of which were myalgias and fluid retention,
and side effects related to the new diagnosis of CML, particularly anxiety and
insomnia. Hematologic remission came on time, as expected, and cytogenetic
remission did as well.
More than 1 year later, though, the BCR-ABL
transcript level “bumped” a bit, eventually leading to a series of
tests and anxious conversations, including whether we should switch to another
TKI. After considerable back and forth, my patient stayed on imatinib. Her
transcript level again decreased, and she entered a complete molecular
remission.
Throughout this time, we also talked about important
life considerations, including concerns around starting a family, and the
effect that her diagnosis and treatment might have on this.
A few years have passed since I met this patient, and I
recently was invited to a luncheon during which she publicly spoke about her
experience. I was humbled and self-conscious as she described the effect that I
had apparently made upon her care and her experience. Although I wasn’t
always sure how much I had done, besides prescribing a miraculous drug that
others had developed, she had remembered all of the office visits, phone calls
and email conversations that we had from the time she first walked into my
clinic with an elevated white blood count. I was particularly struck when she
said that, no matter how busy I was, I always made her feel like she was my
most important priority.
I admit that my most immediate reaction when I heard
these words was guilt. Was she being too kind and overly generous? Was I still
that way now, as my professional responsibilities had piled up in my first
year-and-a-half on faculty? Did I act that way with all of my patients? Did
this attitude guide my current interactions with all of the many people
involved in our clinical care programs — our coordinators, nurses,
extenders, pharmacists and social workers — whose daily requests for my
time I struggled to balance with the nine or 10 other things competing for my
attention at any given moment?
In the days since I was privileged to hear my
patient’s speech, I have been thinking circumspectly about balance and
priority in my professional life. I would like to think that my research
program is important — that I might contribute in some way to our fund of
knowledge in academic oncology, even if not as dramatically as the scientists
who developed imatinib. In the end, though, imatinib is a success because of
the way it has transformed the lives of our patients who take it, and the
experiences of these patients with cancer must remain central to everything we
do as academic oncologists. Why would we be in this business otherwise?
I have come to realize I owe my patient a great deal for her insightful
words, which have caused me to take stock of where I am professionally. Each
day I think of her as I shuffle what I do during the day so that my patients
and their needs always come first. Sometimes, our patients are our greatest
teachers.
William Wood, MD, is assistant professor of medicine in
the division of hematology/oncology at the University of North Carolina in
Chapel Hill. He may be reached at william_wood@ med.unc.edu.
Disclosure: Dr. Wood reports no relevant financial disclosures.