New cancer treatments should inform patients about quality of life

E

very doctor or nurse has “the one” — that memorable patient who made a career-shaping impression.

For me it was a 13-year-old boy with leukemia. I’ll call him Joey, although that’s not his real name. When I met him 20 years ago, childhood leukemias, like acute lymphocytic leukemia, were generally considered curable. What Joey had, acute myelogenous leukemia, wasn’t.

Joey had already been through chemotherapy several times, which had left him exhausted and ill. Each one had failed to put his cancer into remission.

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In a last-ditch effort to prolong Joey’s life, he underwent a bone marrow transplant with cells donated by his father. Because it was an incomplete match, the transplant came with life-threatening side effects. Joey was wracked with seizures and repeat infections. Just six months after the transplant, he died without ever once having been able to step outside the hospital.

It was devastating for Joey’s family — and a wake-up call for me.

When I first started my career as an oncology/hematology nurse practitioner and educator more than 25 years ago, the main goal of cancer treatment was usually to extend life, no matter what the quality of that extra life was. Joey’s experience made me face a moral dilemma — was this the right approach, or should we ensure that whatever extra time we are giving to patients is actually worth living?

Fast forward a decade. I had left nursing to pursue a career in pharmaceutical drug development. Breakthroughs were being made in understanding cancer that led companies like ImClone, where I then worked, to develop targeted therapies.

It was a heady time. Many believed that a cure for cancer was in sight, and that research would create new therapies that extended life while maintaining its quality. But cancer is a formidable and…

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