23 Aug The clinical trial treatment train

By Christine Cissy White, The New England Journal of Medicine (NEJM)

Being on a clinical trial is like being on a speeding train you hope will deliver you to a vacation destination where you might rest, recover, and remember what you love about life — but first, you must promise not to sue if it crashes, maims, or kills you.

Despite the risks, you pray for the golden ticket — a rare spot in a new trial where entry is limited to less than 500 people. You’ve already been told the train is full when suddenly, your oncologist appears like a wizard days before you make do with a mediocre staycation (the standard of care), because one seat has become available.

You don’t think about who died, “failed out,” or quit the trial because you are packing, prepping, and searching for your passport (qualifying for the trial requires extensive labs, a computed tomography [CT], a positron emission tomography-computed tomography [PET-CT], electrocardiograms [EKGs], an echocardiogram, and an ophthalmology visit).

How does a mother with metastatic ovarian cancer make the best use of her time? How does she measure the loss of time, money, and her most precious resource — energy? Instead of trying for more time, should I be writing letters, finalizing wills, taking bucket-list trips, or making recordings for every major event I’ll miss (the graduations, birthdays, weddings, and births)? Should I enjoy ordinary meals, phone calls, and laughs while I’m well enough?

How much of my time do I sacrifice hoping for more? Read more …