thelizarmy.com

Context: My father died from glioblastoma in June 2016. After diagnosis he declined all treatment and died within seven months

Many trial sites fail to meet enrollment needs required to conduct trials In drug development, the term “endpoints” means the desired outcome of a therapy approved by the U. S. Food and Drug Administration (FDA). Sadly, over the last 30 years there has been just 4 approved drugs and 1 approved device to treat brain tumors, and these therapies have made just minor impacts on our OS. So what if the FDA approved therapies (drugs and devices) based on different endpoints, and not on OS? * PFS = progression free survival (the time between the first round of treatment and recurrence) * QOL = quality of life, and if the treatment that has a positive impact on other aspects of our disease, for example seizure control or a decrease in neuro-toxicity (the bad stuff treatment does to our brains) Endpoints are interesting, but designing new endpoints still does not provide a solution to the problems outlined at the start: low trial enrollment.

However, as I look back on the last ten years, I cannot deny how my experience as a person living with a brain tumor has shaped me in unexpected, touching, and sometimes thrilling ways. We’ve responded to every emergency thrown our way over the last ten years with the mindset of, “We’ve seen worse. Today I receive my care at a major academic medical center on the west coast. I’ve been feeling well; seizures are under control with medication; my anxiety about this brain tumor stuff is low most of the time, although when I hear about other long-term survivors having tumor progression I realize I am not invincible.

The three-year-old me asked my mother this question after a surgery in 1982. The mass in my brain was a mystery to all of us, but questioning from the doctors made me feel like they thought I knew something and was hiding it from them. When asked about previous surgeries I consistently said, “I had tubes put in my ears when I was three. Brett would shake his head when I provided this detail because he felt it was irrelevant to the matter at hand, whereas I believed I was being a “good patient” by telling them everything I knew.