This event reflection was written by Nancy M. Gregory, MBA, CFE, CCEP, a cancer survivor, TCF volunteer, and community member.
Physical health is never just about our body. It’s our mind, feelings, and ambitions.
Being diagnosed with a rare cancer brought my life as I knew it to a standstill. Unbeknownst to me until that moment, rare cancers often have few, if any, treatment options. My rare blood cancer was no different. The only available treatments were a chemotherapy protocol that dated from the 1970s.
Throughout my cancer journeys and beyond, I was dismayed by the lack of resources and initiatives focused on addressing rare cancers. It wasn’t until this year that I became aware of TargetCancer Foundation, an organization devoted to increasing “the development of more effective and personalized treatments for people with rare cancers.”
I was uplifted by attending TargetCancer Foundation’s annual Think Tank on Advancing Precision Medicine in Rare Cancers that was held in November. The fellowship that arose from being in a gathering of leading researchers and oncologists, patient advocates, and patients, all with an aligned common purpose, was palpable. Right from the start, I was drawn in by a keynote address from Allen Chankowsky, a patient whose life has been prolonged through precision medicine instead of standard of care, or one-size-fits-all medicine. His personal story illustrated the promise of hope, as reflected in both scientific results and personal experience, which is exactly what every rare cancer patient needs. During my cancer journeys, I wish I had known that I was not alone in thinking that the doctor/patient relationship should be collaborative, not didactic, when it comes to exploring treatment options.
I was equally energized by a discussion about re-inventing the way cancer research is performed such that it is tumor agnostic, rather than organ-tumor focused. As a lay person, even one who has read The Emperor of All Maladies, I had never thought about the tunnel approach by which novel cancer treatments are developed. Without treatment, I was told my rare cancer would have killed me within three months. I didn’t have time to wait for a multi-phase clinical trial to become available. TargetCancer Foundation’s Think Tank brought much-needed awareness to an innovative clinical research approach — ramping up drug development efforts and approvals for tumor agnostic indications that can treat a variety of cancers, including rare cancers. My enthusiasm for such an approach was not quashed by hearing about barriers to rare cancer clinical trials and targeted treatments. As someone who volunteers in the rare cancer patient space, I was also stoked to hear about TRACK, TargetCancer’s remote, precision genomic clinical trial that is enrolling 400 rare cancer patients who receive genomic testing and test result interpretations, as well as treatment recommendations from a panel of medical experts.
The Think Tank ended with moving presentations from caregiver family members who established their own foundations (CureMEC, Max Vincze Foundation) to drive research into rare cancers that took or are threatening to take their children’s lives. There is nothing more powerful than the voices of those who have lived or are living through the burden of a rare cancer journey.
I can’t thank TargetCancer Foundation enough for organizing this phenomenal event and for allowing me to participate in a volunteer capacity. I am inspired and awed by the work of the TCF team, advisory board, and the leaders in the rare cancer field with whom they have partnered to speak up for the rare cancer community.
Keynote Speaker and Patient Advocate Allen Chankowsky
TCF CEO Jim Palma and TCF Volunteer Nancy Gregory
Suzanne Vincze, TCF President Kristen Palma, and Michael Casaus spoke during the Patients and Caregivers Closing Discussion