From Our Grant Recipients
Sophie Cantu Stevens
Sophie Cantu Stevens has a unique Ocular Melanoma journey, and Eye on Grace is honored to be a part of her story. We’re sharing this Q&A with Sophie to highlight her resilience and positivity as she seeks effective treatment.
Q: Tell us a little about your Ocular Melanoma journey -- when and how were you first diagnosed?
A: I was diagnosed in November 2022 after seeing flashes in my eye. I was sent to a retina specialist straight from the eye doctor; they did a quick exam and told me that it was cancer. I was then connected with Dr. Harbour at UTSW in Dallas, who treated my original tumor.
In August of 2024, I had my scheduled three-month scan due to being Class 2 Prame negative. I was pregnant at the time and got scan results showing suspicious liver lesions and a pregnancy loss. A biopsy confirmed metastatic uveal melanoma. I started on the IDEAYA trial, which I stayed on for four months until disease progression. I then enrolled in the RP2 trial and was unfortunately randomized to the standard of care. I received two rounds of IPI/NIVO, and experienced disease progression as well as colitis. After recovery from colitis, I was able to join the TIL trial at UPMC with Dr. Kammula. I completed treatment on August 15!
Q: Have you had to travel significant distances or often for your Ocular Melanoma treatment? How does that impact your lifestyle/work/family life?
A: After my original metastatic diagnosis, I sought two second opinions out of state. My IDEAYA treatment was local in Dallas, but the RP2 trial was in Scottsdale, Arizona, so we had to travel there multiple times. We traveled to Pittsburgh three times for surgery, appointments and a three-week hospital stay. I used all my PTO and am on short-term disability. My husband's work has been extremely flexible, but he must work remotely when I am getting treatment, which causes additional challenges. I have missed events with friends and family due to appointments and treatment; however, we make the best of the time we have with close friends and family while at home.
Q: What has the support of the Eye on Grace Foundation meant to you in your Ocular Melanoma journey? How have we made a difference?
A: We have spent thousands and thousands of dollars on travel for treatment. If not for support from Eye on Grace, we would have depleted our savings. Eye on Grace has allowed us to continue to live our lives and alleviated the financial burdens of traveling for treatment. Eye on Grace has been a true lifesaver for my husband and me.
Q: What do you wish people understood about what it's like to have this disease, especially a rare cancer?
A: When you have a rare cancer, treatments are not always readily available locally. I have an incredible team in Dallas; however, two of my four treatments have been out of state. You have no choice but to spend the money if you want to receive the best care.
There is life “before cancer” and life “after cancer.” Dealing with cancer sometimes feels like a part-time job on top of my full-time therapy job. It changes your entire perspective, which at times has been a blessing. It opens your eyes to healthcare disparities and inequities, and the immense need for more funding and research. Cancer has changed my idea of what the future holds. At 31 years old, I had my world rocked, but with the support and encouragement of people like Ashley and the Eye on Grace Foundation, I have continued hope that this is not the end of my story.
Q: What message do you have for the many generous donors who give to support the work of the Eye on Grace Foundation?
A: You are changing and saving lives. I was married for about six months when I got my metastatic disease. I am young and healthy and full of life, and I want a future. You are helping make that a possibility. Thank you from the bottom of my heart.