Chordoma Foundation

An experimental treatment changed the life of a courageous young chordoma survivor


As the youngest child in a family of California dairy farmers, Frankie Fernandes was used to waking up early. But at five years old, he started waking up in the middle of the night crying of headaches and neck pains. The local ER dismissed his symptoms, but his parents, Frank Sr. and Diane, knew something was wrong.

Further testing at the University of California San Francisco (UCSF) revealed a sizable chordoma pushing on Frankie’s cranial nerves and brain stem. The situation proved urgent, and he was plunged into three harrowing surgeries, weeks of recovery in the ICU, and months of radiation.

Frankie and his proton therapy team at the Loma Linda University Cancer Center in 2011.

“Thankfully, we had a large network of friends and family who offered to help out at home – both on the farm and with Frankie’s sisters. Their selflessness gave us the flexibility we needed to focus on Frankie and his treatments.” – Diane Fernandes

 

After that, Frankie remained in good health until he was 10 years old. Then, suddenly, the tumor returned with a vengeance, metastasizing to his lungs and rib cage. Not all the new tumors were removable by surgery, so his parents searched for other treatment options.

As part of this process, they got Frankie’s tumor profiled, and discovered that it was missing a gene called INI1, which protects cells from becoming cancerous. This revelation turned out to be critical as it opened the door to a clinical trial testing a new experimental therapy called tazemetostat for patients with the same gene loss as Frankie.

The family also sought support from our Patient Navigators, who helped them understand the current state of research, and parse through the practical, emotional, and logistical issues they were facing.

With the support of his parents and the Foundation, Frankie joined the tazemetostat trial. Remarkably, his tumors began to shrink almost immediately, and today they are barely visible on scans. Aside from his regular trial treatments, Frankie has returned to life as a typical middle-schooler, playing soccer with his friends and saving for a new Xbox.

“That’s the unique thing about the Foundation. It empowers families like ours with the knowledge and tools to become our own best advocates. Having a tight-knit community to turn to for information and support is invaluable when you’re facing a disease this rare.” – Frank Fernandes Sr.

 


Frank Sr. and Diane Fernandes with their children Maddie, Frankie, and Hayley in 2015.

Frankie’s story is proof positive that investments in chordoma research and patient care are paying off. They’ve opened the door to new treatment options, shrunk his tumors, and extended his life.

We are hopeful that Frankie’s tumors stay in remission, but meanwhile, continue to push forward a pipeline of promising new therapies that could provide additional options should he ever need them.


To find out more about our Drug Screening Pipeline and Clinical Trials Program, as well as opportunities to support these important programs and keep the momentum going to help push better treatments across the finish line, please contact Executive Director, Josh Sommer at josh@chordoma.org.