By Pat Carragher - October 20, 2020
When Zach Sobiech passed away from complications of osteosarcoma in 2013, his song “Clouds” had already racked up millions of views on YouTube, charted on the Billboard Hot 100 and hit No. 1 on iTunes. Now, seven years after his death, Sobiech’s story has been adapted into a movie. The appropriately named “Clouds” debuted on the Disney+ streaming service Oct. 16.
The film follows Sobiech’s diagnosis at age 14 through his four-year journey with cancer, where he turned to music as a way to say “goodbye” to his friends and family. His infectious personality and catchy song quickly caught the attention of Jason Mraz, The Lumineers and Sara Bareilles, which helped turn him into an overnight sensation.
What is osteosarcoma?
The film also shines a much-needed spotlight on osteosarcoma, a rare disease overall but the most common bone cancer affecting fewer than 20,000 Americans, mostly adolescents and young adults between the ages of 12 to 25.
According to Dr. Damon Reed, an oncologist in Moffitt Cancer Center’s Department of Individualized Cancer Management, osteosarcoma commonly appears during growth spurts. It typically begins as a pain in a bone, most commonly in the legs or arms, but eventually worsens over time.
The current treatment is inpatient chemotherapy for 10 weeks, followed by removal of the tumor through surgery, and then followed up with 19 more weeks of chemotherapy. The film paints a picture of the effects that those kinds of treatments can take on someone in their teenage or young adult years.
Osteosarcoma Research at Moffitt
“Chemotherapy used in newly diagnosed osteosarcoma patients hasn’t changed in decades,” said Reed. “Osteosarcoma needs teams dedicated to better therapies.”
"Chemotherapy used in newly diagnosed osteosarcoma patients hasn’t changed in decades. Osteosarcoma needs teams dedicated to better therapies."- Dr. Damon Reed, Medical Oncologist
Reed and Dr. Mihaela Druta are leading a phase 2 trial along with Dr. Patrick Thompson from the University of North Carolina through the National Pediatric Cancer Foundation’s Sunshine Project, a research network consisting of more than 20 cancer centers across the United States. This trial is also funded by a Live Like Bella Childhood Cancer Foundation grant through the Florida Department of Health.
Single drug immunotherapy has not had an effect on osteosarcoma, so this trial combines immunotherapy with a drug that may both increase the immune system’s response and better reveal the tumor to the immune system. The purpose of the trial is to determine if this novel combination is safe and if it can improve survival in patients who have relapsed.
While Sobiech’s life was ultimately cut short by osteosarcoma, Reed says about two-thirds of patients can make a full recovery if the disease is caught before it spreads.
Sobiech has received a number of awards since his passing, including the Dream Maker Award, the Children’s Cancer Research Fund’s highest honor. His fund for osteosarcoma research keeps growing, now at more than $2.2 million.