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carley r: ewing's sarcoma

What if your cancer came back?

“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."

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, 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.

TheA2C: How did you first find out that you had Ewing's sarcoma?
Carley: 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.
 

TheA2C: What were you told about the treatment you would receive?

Carley: They basically told me that it was going to be pretty rigorous—it’s one of the more intense treatments that is offered—and that it would take 9 months. It ended up taking 11 months. But initially I was ready for a 9-month battle.  I received 13 rounds of chemotherapy and 43 rounds of radiation. Then I was cancer free for a year. 
 
When the cancer came back the summer before my freshman year of college, we just didn't really feel right going back to chemo. All the research that we had done pretty much showed that the second line chemotherapy for my cancer was not effective. It's a stalling method, really. And so we were really hesitant to fall back on that option. We were desperately looking for new upcoming ideas in medicine rather than going back to chemotherapy.
Carley_horiz

TheA2C: You participated in a clinical trial of an experimental treatment called FANG, which uses your own tumor cells as a vaccine. Why did you choose this trial?

Carley: 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.

TheA2C: What was the experience of receiving the vaccine injections like?
Carley: 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.
 
TheA2C: How are you doing now?

Carley: I still have stable disease—no new growth, no measurable disease—since I've gotten the vaccine.

 

TheA2C: Would you recommend this treatment to friends or family members who are going through something similar?
Carley: 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. 

 

TheA2C: Will you be doing the treatment again?
Carley: Well, you can't do any more unless you have a tumor that they can take out and use to make more vaccine. So in the event that I recur, hopefully that would be one of the options—to do the vaccine again. One of the things that's so great about the treatment is that it's not toxic, so you can do it as many times you want.
Carley_vert

TheA2C: Your family runs a foundation to raise money for pediatric and adolescent cancer research. How did that come about?

Carley: We started the Rutledge Foundation during my first round of treatment to raise money for research and to raise awareness for adolescent cancers, since they kind of fall through the cracks. That was our initial goal. Now that we've discovered this whole immunotherapy world, we've really geared our fundraising toward supporting the vaccine. We’re trying to get other patients on the trial as long as it's in their best interests according to their doctors, and trying to spread the word so we can get more funding to advance the trial into frontline treatment for all Ewing patients.

 

TheA2C: What were you most excited to do once you were feeling better?

Carley: Just being active again. After chemo, I worked really hard to get my strength back so that I could be a normal, active teenager, because my favorite hobbies are skiing and hiking and running. Those are the things that are important to me, so I worked pretty hard to get my body to a point where I could accomplish them again.
 
TheA2C: Have you chosen a major yet, and do you have a plan for what you might want to do after college?

Carley: I'm studying ecology and conservation biology. My plan is to go to graduate school and then to enter the world of conservation biology as a professional researcher. I'm very excited. 

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