Medical Hero Spotlight: Katie Doble & Her Caregivers: Facing Ocular Melanoma

katie doble medical hero spotlight
Diagnosed with Ocular Melanoma

In 2013, Katie Doble visited her ophthalmologist after experiencing vision issues in her left eye. She was immediately referred to a retina specialist who diagnosed her with ocular melanoma. Thankfully, a full body scan revealed the cancer was nowhere else in her body. Katie underwent a week of radiation plaque therapy to treat the tumor inside her eyeball, which resulted in permanent loss of vision in that eye. During treatment, her doctors biopsied her cells and categorized her cancer as stage 1A, meaning she had less than a 2% chance of metastases. Still, it was recommended she have biannual liver ultrasounds and chest x-rays in case her cancer spread.

Two days before Thanksgiving the following year, at 32 years old, Katie’s ultrasound showed multiple tumors in her liver.

“On Thanksgiving morning, my dad flew to Denver so he could be with me the following day at the liver biopsy that would confirm my diagnosis. Nick, my boyfriend at the time, had been planning to propose to me that day and was warned by family members he might want to hold off because of my diagnosis,” Katie recalls. “I found out later that he told them my cancer changed nothing; I was still the girl he wanted to marry and support. I won the husband lottery.”

On Thanksgiving Day, Nick and Katie got engaged. The following day, a biopsy of her liver confirmed Katie’s ocular melanoma had metastasized. “This would have been a difficult diagnosis for anyone, but the news hit my family particularly hard because my mom passed away from pancreatic cancer when I was 15,” Katie says.

Starting Treatment: Clinical Trials

The oncologist who diagnosed Katie advised against clinical trials claiming they would be very expensive. The one treatment option available by the FDA would have bought Katie 16 months of life. 

“After meeting with that oncologist, my dad got on the phone with doctors across the country, looking for specialists,” Katie says. Her father, Dr. Jim Ortman, presented Katie’s case to the tumor board at his hospital and was referred by a doctor to Memorial Sloan Kettering Cancer Center in NYC, where a couple of clinical trials for ocular melanoma were taking place. In early 2015, Katie enrolled in her first clinical trial in New York for a medication called trametinib.

During her treatment, Katie’s family developed a schedule where they made sure someone was always with her for scans or appointments. “It was important to figure out how to support me without overburdening one member of the family,” Katie says. When able, Katie’s siblings attended appointments, as well as Nick and Dr. Ortman. In the five weeks she was required to stay in New York for treatment, she had nine visitors.

Six months after starting treatment, scans revealed growth and Katie was moved to the second arm of the trial, adding another drug. Additional growth in the following scan two months later eliminated Katie from the trial completely. However, the Doble family wasn’t discouraged.

“In 2014, I went from no tumors to 12 tumors in the span of six months. Taking trametinib didn’t shrink my tumors, but it did buy us more time,” Katie notes.

With cancer, it’s important as a patient and caregiver to develop a plan with your doctors for the next steps should your current treatment not be effective. While Katie was in New York, Dr. Ortman was working behind-the-scenes with her doctors to understand treatment options going forward.

After her first clinical trial, Katie was excited to get a break in treatment and worked to regain some of the 30 pounds she had lost. Shortly after returning to Denver, she enrolled in a second study at UCHealth in Colorado but was quickly removed from the trial when the side effects were too intense. It was determined the doctors would perform a targeted radioembolization on half of her liver, leaving the other half untreated as a baseline so they could see how future systemic treatments were working. A third clinical trial, also at UCHealth, was short-lived and the other half of Katie’s liver was embolized. The embolization stabilized Katie’s liver for 3.5 years.

In 2018, Katie’s treatment journey continued when she presented with stroke-like symptoms. Although never confirmed by biopsy, her doctors suspected a brain tumor. Katie underwent a Gamma Knife procedure, which was successful. Then, in 2020, Katie experienced a major recurrence with tumors in her liver.

Katie’s doctors recommended she start TIL therapy at UPMC in Pittsburgh. Although TIL therapy is seen by many as a relatively new treatment, it has been developed and improved over the last several decades. In fact, Dr. Ortman recalls that his late wife was slated to start what he believed to be an early version of TIL therapy before she passed away. Nearly 25 years later, the same treatment would save Katie’s life.

“For me, TIL therapy was incredibly effective. Within a year, nearly all my tumors had disappeared or shrunk besides one, which we jokingly named Uncle Fester as my doctor referred to it as the ‘festering problem,’” Katie recalls. In 2021, Katie had major surgery to remove ½ of her liver, including ‘Uncle Fester’. Upon waking, she was told she had No Evidence of Disease (NED).

Dr. Jim Ortman, Physician & Caregiver

Since the beginning, Katie’s father, Dr. Jim Ortman, and her husband, Nick Doble, have provided unique but equally important support. As an Internist, Dr. Ortman helped research treatment options and navigate the healthcare system. As her partner, Nick provided the emotional support and the day-to-day caregiving Katie needed during treatments.

“When Katie had her liver biopsy in Colorado, the pathologist and I looked at the black tissue and I could immediately tell it was melanoma; it was devastating,” Dr. Ortman recalls.

From her initial diagnosis, Katie’s father was doing extensive research to find the best specialists and treatment options for Katie. He advocated for her to begin participating in clinical trials and helped relay any symptoms or questions she had to her care team.

As Katie and her father navigated Western medicine for ocular melanoma together, Katie’s decision to seek out complementary treatments alongside the standard medications became a point of discussion between the two.

“I started seeing a nutritionist and taking supplements and my dad was skeptical of this type of medicine,” Katie remembers. Eventually, Dr. Ortman accompanied Katie to an appointment and the two had a positive conversation about the importance of nutrition when battling cancer. “As a cancer patient, you lose control over much of your life. My nutritionist really helped improve my relationship with food during this time. From experience, I know that chemotherapy hurts. Even if the supplements weren’t helping, they ultimately weren’t hurting me and gave me back some control over my life,” Katie says.

Nick Doble, Husband & Caregiver
Nick Doble had known of Katie’s cancer since they met in 2013. “When it metastasized to her liver, there was never a thought that we should reconsider our relationship,” Nick says. “All I knew was that I wanted to be with her and support her throughout her treatment.”

Nick admits to experiencing a learning curve when it came to understanding Katie’s diagnosis and treatment options, something most loved ones feel early on when emotions are high, and they are receiving an influx of new information. Growing up in the UK, Nick notes that he was much less familiar with clinical research and how to find a trial. “I was so grateful to Jim for the research he was doing and the knowledge he already has as someone in the medical field,” Nick remembers.

As her spouse and caregiver, Nick tried to keep Katie positive during her treatments and provide what she needed most on any given day, whether that was listening, giving her space, or providing a distraction (like the time he caved when she pulled the cancer card to get a dog). During TIL therapy, Katie and Nick branded themselves “the increDOBLES.”

“There were a lot of difficult discussions Nick and I were having that couples our age don’t have to think about, including end of life care and wills,” Katie says. Katie chose to appoint both Nick and Dr. Ortman as her power of attorney so the burden would not fall on one person alone.

As a caregiver, Nick advises others in positions like his to make sure to balance your own wellness and mental health to support your loved one. “For me, exercise has been a great outlet and form of self-care,” Nick says. “It’s so important to find support whether that’s by therapy or talking to others.”

Advocacy Work & Advice

Katie was a recipient of the 2017 Courage Award at the Melanoma Research Foundation’s Wings of Hope Gala where she had her first public speaking engagement discussing her cancer. The experience motivated Katie to share her story and begin participating in other advocacy projects. Dr. Ortman and Katie shared the father/daughter – doctor/patient perspective at the Colorado Cancer Coalition in 2019. In 2021, Katie received the Outliving It Award from First Descents, a non-profit that provides the healing power of adventures to young adults and caregivers facing cancer and MS.

“I know my cancer journey is a story of hope, which I’m grateful for, but it also comes with a lot of wisdom and knowledge I can share with others because of my dad,” Katie says. “Without him and Nick, I wouldn’t be here today.”

When it comes to sharing advice about getting involved in clinical trials and navigating treatment, Katie and Dr. Ortman have a wealth of information from their experiences.

“I believe in the importance of getting a second opinion and always having a Plan B when it comes to treatment,” Katie shares. “There is no room for ego from doctors when a patient is fighting for their life, it’s not personal. If it weren’t for the second opinion I got, I wouldn’t be here today.”

Dr. Ortman advises patients who may be interested in joining a clinical trial to speak with their care team or oncologist to see if they are eligible or if they have any recommendations.

Additional Resources:

https://www.ocularmelanoma.org/basics-of-om
https://futurehappyself.com/
https://melanoma.org/
https://clinicaltrials.gov/

To search for medical conditions in a specific location, visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

For volunteer opportunities with CISCRP, visit our Volunteer page.

Written by Lindsey Elliott, Marketing & Communications Manager, CISCRP | lelliott@ciscrp.org

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