rewrite this title I was given 16 months to live after being diagnosed with a rare cancer. Clinical trials gave me hope—and more time

Katie Doble was diagnosed with stage 1A ocular melanoma in the spring of 2013. Ocular melanoma is a rare type of cancer that develops in the eye, specifically in the melanin (pigment)-producing cells.

At the time of Doble’s diagnosis, treatment options for her cancer were very limited. She underwent radiation treatment, but her cancer progressed to stage 4 by the fall of 2014, with Doble having developed multiple tumors on her liver. Her doctor gave her an estimated 16 months to live.

Doble turned to clinical trials for a chance at a new and effective treatment. She explored about eight trials total, participated in four, and traveled out-of-state for two. She found success in her fourth clinical trial, which involved a T-cell-based immunotherapy treatment. This treatment modified her immune cells to identify and attack her cancer cells.

The treatment shrank all but one of her tumors. Then, a final surgery to remove her most stubborn tumor left Doble with no evidence of disease. Despite her original prognosis, Doble has been cancer-free for over three years.

Now, Doble serves as an advocate on the Patient Advisory Board for Walgreens Clinical Trials. “I want people to know that if you’re faced with a disease or a cancer, clinical trials can be a great option for treatment. Clinical trials continued to buy me more time. They bought me more than my 16 months,” Doble told Health.

When you first received your diagnosis, were you aware of clinical trials as a treatment option?

Doble: When I was diagnosed with stage 4 ocular melanoma, my doctor told me I had one treatment option. This drug was not FDA-approved for my specific condition, but rather for melanoma of the skin. She told me I had 16 months to live.

My doctor did not originally suggest clinical trials as an option. It was my dad, an internist, who asked about it. The only response we got was that it would be very expensive.

Thankfully, my dad was helping guide me, and he started calling doctors all over the country to find out what options would be available. He knew I’d have a better chance at survival if we went the clinical trial route.

What do you wish you had known about finding and getting into clinical trials?

Doble: Going into this, I didn’t know anything. I didn’t know what to expect. I didn’t know how to navigate. I learned as I went along, partially from my dad’s guidance, but also from the doctors I met throughout my clinical trial search.

My first clinical trial doctor, oncologist Michael A. Postow at Memorial Sloan Kettering Hospital in New York City, knew this was a foreign world to me, so he gave me a crash course in clinical trials.

He taught me the difference between FDA-approved treatments and clinical trials, the difference between targeted and systemic treatments, and the importance of building a team and having a plan B and C.

While I was in my first clinical trial, which lasted about eight months, Dr. Postow was sharing my case with other specialists nationwide and learning what other trials were available or becoming available.

Oftentimes, when I was eliminated from a trial, there would be a new trial available that maybe hadn’t existed three months ago. He helped us establish the strategy for navigating changes.

I had another doctor, Dr. Richard Carvajal, an oncologist at Columbia University in New York City. I explored a couple of different clinical trials through him, and although I never ended up getting treated through him, he was a sounding board for me.

He would always pick up the phone when we were at a crossroads, trying to determine what treatment was best to do next, and would weigh in and help us.

How essential was your medical network in finding a successful trial?

Doble: Building a medical team is one of the most important aspects of treating a rare disease—knowing who the specialists are, and also making sure that the specialists know who you are. 

By the time I met the doctor at my fourth and final clinical trial at the University of Pittsburgh Medical Center, Dr. Udai Kammula, he came into the room and said, “Wow, Katie, it’s so nice to finally meet you. I’ve been following your case for years.”

What was an unexpected challenge of being in a clinical trial?

Doble: Being in clinical trials required a lot of travel, which was costly and tough on my body.

Travel is not always necessary for clinical trials, but it is often a requirement for rare diseases and rare cancers, like mine. At the time of my diagnosis, there were no ocular melanoma specialists in my home state of Colorado, which was pretty shocking to me. It was necessary to leave the state to get treatment.

My first clinical trial was at Memorial Sloan Kettering in New York City. I traveled from Denver, where I live, for the treatment and the first five weeks of the trial. It was very labor-intensive. I had to have blood work done every week, and I went to two or three appointments every week.

Instead of commuting every week to New York, I rented an apartment for five weeks because I didn’t know how I’d feel being in a new place and receiving cancer treatment. Cost-wise, it ended up being comparable to flying there and back every week. I was also able to work out of my company’s Manhattan office, something that I was very lucky to be able to do.

The side effects of the treatment were pretty gruesome, so I was happy with the decision I made to stay put in New York. It was also kind of exciting to be 32 years old and suddenly get the opportunity to live in New York City for five weeks, despite the circumstances. I made the best of it. I went to a Broadway show. I spent time with some good friends who live there.

What do you wish you had known about the ups and downs of participating in multiple clinical trials?

Doble: I wish I had known that it’s not uncommon to get eliminated from a trial, which is not something the doctors always talk about. I should have known by the way my doctor was searching for backup options that it was a possibility, but when you’re taking things one day at a time, you’re not really thinking that far ahead. So that was surprising to me.

I don’t think it’s as common to do multiple clinical trials, but for a rare disease, and for everyone that I know in the ocular melanoma community who’s going the clinical trial route, most of my peers have done more than one. You need to be mentally prepared for that.

I was eliminated unexpectedly from my second trial. I had developed really bad gastrointestinal issues, and I was removed from the trial without being told. It came as a shock. I went to get my second infusion, and I was told, “You’re no longer in this trial.” That was pretty jarring because I didn’t have a plan B or a plan C already lined up, and it was a huge lesson.

Moving forward, I learned which questions to ask my doctors and how to anticipate such situations before they caught me off guard. There’s so much you can’t prepare for. While it is essential to think ahead and have a plan B and C, you also need to take each day one at a time. That’s really all you can do when you’re in the fight.

Looking back, what are some of your biggest takeaways from your treatment journey?

Doble: I was a young 30-something when I received my diagnosis. All of my friends were planning weddings and having babies, and I was just trying not to die. I had been given 16 months to live, but it was important for me to maintain as much normalcy as I could.

The big thing I did was continue making plans. My boyfriend—now husband, Nick—proposed two days after my stage 4 diagnosis. It wasn’t necessarily this happy, carefree time of our lives. It was a truly terrifying time in our lives.

I made this decision of, “I don’t know if I’m planning a wedding or funeral right now, but I’m just going to take each day as it comes.” Nick and I are really committed to each other. We were like, “Let’s just keep living.” We got married, and then we decided it was a really good idea to build a house. So, we built a house, and then I pulled the cancer card to get a dog.

The beauty that came of it was that life in general became rewarding, especially the mundane moments of life. I recall hosting a game night at my apartment with my husband, my sisters, and their husbands during that first year. We had been traveling a lot; I hadn’t seen them in a while, and I wasn’t doing great.

I wasn’t drinking alcohol, but I was drinking Pedialyte out of a wine glass, and we played games. I remember laughing hysterically and soaking up that moment, being incredibly grateful. I feel like cancer taught me to appreciate the little moments, in the chaos, in the challenges, and to be present when you do get those snippets of normalcy.