pATIENT STORIES...why we work so hard

Phyllis traveled the world and enjoyed adventure as a global airline professional.  She eventually settled in Memphis, TN with the love of her adult life.  Her education and intelligent approach to business accelerated her career in banking.  Unfortunately, Phyllis was diagnosed with ovarian cancer, stage IV, meaning the cancer had metastasized across her body.  She made it her “new career” to find out everything about her diagnosis, treatment, trials and how to choose the right next steps.  She moved through subsequent lines of therapy per the standard pathways.  She began searching for a new therapy trial with a realistic view – not everyone is a candidate for a trial, but for the ones that looked promising for her disease, she was willing to have a molecular diagnostic test and travel long distances to participate in the trial.  Phyllis took the list of trials, which she had deeply vetted, to her oncologist.  He said NO to the molecular diagnostic test and to the clinical trial.  Sadly, she died in year 5 begging to get on a trial.   The trial she wanted to get on was for a drug that was later approved for her diagnosis.  

During the last year of Phyllis’ life, she was an amazing champion for Meals on Wheels delivering meals to elderly; Habitat for Humanity, actually swinging the hammer to help build a home for others, and attending Rhodes College’s Comparative Religion classes.  Phyllis was an amazing woman, who helped others, and tried to help herself as her own oncology advocate.  “Be your own advocate, because no one can do it for you, but YOU” is something Phyllis would say.   Today, Spesana builds technology and services to advocate for Phyllis because no patient can do it alone without the improvement of healthcare.

Keith was one of those quiet, brilliant people who was accepted to an Ivy League school, but chose to save  money and go to the state college close to home.  He succeeded in every job including building computer chips for rockets.  He loved music and technology built to help people.  Sadly, he got a surprise diagnosis of prostate cancer.  Keith had access to the best medical centers in the world, but chose to stay close to home for treatment.  Initially, the treatment was standard and he continued his committed work schedule.  His oncologist was optimistic that Keith was perfect for a specific trial, so he decided to stop standard of care treatment to clear his system for 90 days.  The plan was to get enrolled in the trial and do the initial lab workup to get randomized into the trial.  There was a scheduling problem getting in to the oncologist and by the time Keith got on the calendar, he was in significant pain.  The shock was that his lab value the day he went to enroll in the trial disqualified him from being enrolled.  The timing of the oncology visit, the delay in getting the lab, and the 90 days without any treatment was ultimately too much.

If Keith had gotten a molecular diagnostic test earlier, and indicated readiness for a clinical trial, his health may have been a good foundation to benefit from the trial.  Keith never liked to be the center of attention.  He was more interested in helping others.  So, every day in every way possible, we think about ways to prevent the scenario Keith experienced.  The goal is to increase the number of patients who get molecular diagnostic tests earlier in the cancer journey. If we make this diagnostic process easy for clinicians, we can ensure there are fewer stories like Keith's.