For almost a year, Carley Rutledge’s doctors told her that the pain in her leg was a sports injury. When the pain kept getting worse, she saw another doctor who gave her the grave news: she had stage IV Ewing’s sarcoma. Carley had been misdiagnosed.
The delay cost her dearly. The aggressive bone cancer had already metastasized, or spread, to distant parts of her body. Carley was treated with chemotherapy and radiation and was cancer-free for about a year. But the cancer eventually returned—just before her first semester of college.
Carley considered having more chemo, but decided instead to try an experimental immunotherapy called FANG (now called Vigil™), which uses her own tumor cells as a vaccine. She’s lucky she did. Two years later, Carley is now a healthy 19-year-old sophomore studying conservation biology at the University of Colorado, Boulder. She spent last summer traveling in South Africa—studying endangered species, bungee jumping, swimming with sharks—and proving that cancer was no match for her unstoppable spirit.
TheAnswertoCancer (TheA2C) spoke to Carley about why she chose immunotherapy, the foundation her family started to support teens with cancer, and her plans for the future.
I was misdiagnosed for almost a year, which is pretty common in young adults because they're generally liable to sports injuries. I did physical therapy for a really long time until eventually I lost feeling in my left side of my leg and the pain had pretty much gotten out of control, so I went to go get an MRI. It showed stage 4 Ewing's sarcoma.
Carley participated in a clinical trial of an experimental treatment called FANG, which uses your own tumor cells as a vaccine.
This one just stood out from all the rest because you use your own cells. You're dealing with your own tumor and your own immune system, so it's tailored to you. It's not off the shelf. And it just seemed like a really positive idea to build your immune system to be able to fight cancer, instead of just breaking it down with chemotherapy.
Basically it's like getting your basic flu shot. It took just about as long and it wasn't any more painful than any other normal immunizations I've gotten in my life. I had 8 shots and got them once a month. My last injection was April of 2013.
I still have stable disease—no new growth, no measurable disease—since I've gotten the vaccine.
Oh, absolutely. It's not the right choice for everybody—it depends on your type of cancer, what stage you're at, how your disease reacts to drugs. But I would definitely encourage people who fall into guidelines of the trial to move towards immunotherapy.
Provide guidance and encouragement to others going through their journey with cancer immunotherapy treatment.
*Immunotherapy results may vary from patient to patient.
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This July for Sarcoma Awareness Month, we look at new research, new treatments, and how we’re working toward a future immune to sarcoma.
CRI-Chordoma Foundation CLIP Investigator Dr. Cassian Yee is exploring how to design cell therapies for patients with a rare type of sarcoma.