Hear candid conversations between people conquering cancer – patients, their family and friends, and doctors and researchers working to help us all.
Doctor after doctor recommended different treatment options for Marlene Portnoy’s husband, Steve, after he was diagnosed with a desmoid tumor. Desmoid tumors are rare, and each doctor admitted uncertainty about their plans.
“Let me tell you, that’s a really scary thing when doctors can’t agree,” said Marlene.
Steve has since recovered, but Marlene has only begun to take on desmoid tumors.
Frustrated by her family’s daunting experiences finding care, she began helping other desmoid patients. Through her advocacy work, Marlene met Mrinal Gounder, MD, a Conquer Cancer researcher and oncologist who treats sarcoma patients.
A Partnership Forms
Dr. Gounder’s research showed success treating desmoid tumors using a drug called sorafenib.
After reading about his work, Marlene encouraged Dr. Gounder to lead a clinical study on his treatment.
Because desmoid tumors are so rare, Dr. Gounder feared finding participants would be a challenge, but in less than two years – and with Marlene’s help - 87 patients were enrolled in a Phase 3 clinical study.
The study was named one of the top 10 oncology breakthroughs of 2018.
“My goal has always been to bring this drug to patients so this can be approved and insurance companies will pay for this, not just in the United States but worldwide,” said Dr. Gounder. “I can only hope this will move in the right direction.”
Partnership is key, Dr. Gounder says, for maintaining progress for all new treatments.
“Whether it’s cancer or non-cancer, collaboration between drug companies, academia, between patient advocates…… these can’t be done in a single institution.”
A partnership forms between a patient advocate and doctor to bring about one of the most important rare cancer discoveries in recent years.