Cancer Survivor Stories: Jamie

Jamie grew up knowing many friends and loved ones who had cancer. Thankfully, no one in her immediate family was diagnosed with it. Then, one day in 2007, Jamie noticed that a birthmark on her left thigh had changed over time. Soon after, she saw a dermatologist, who took a biopsy. The results confirmed that Jamie had stage 2 melanoma.

Jamie’s dermatologist extracted the tumor. This was followed by a wide excision, performed by her surgeon, and a sentinel lymph node biopsy to determine whether the cancer had spread. The biopsy results brought good news: Jamie was in the clear. She was looking forward to getting back to her life.

Over the next year, however, Jamie suffered from multiple infections at the site where the tumor had been removed. She called her surgeon numerous times and always received the same response: It was not melanoma, and she should have it treated by her primary care physician. After the third infection, Jamie’s medical oncologist convinced the surgeon to see Jamie again; the surgeon reluctantly agreed, saying perhaps a suture was left behind. When the appointment finally took place, the surgeon discovered a massive melanoma in Jamie’s deep tissue. This time, Jamie was diagnosed with stage 3 melanoma. It was then December 2009, and Jamie had just gotten married.

Together with her medical oncologist, Jamie reached out to several experts in the area to determine next steps. The general advice she received was to watch and wait.

Shortly after, Jamie learned she was pregnant, and she and her husband were overjoyed to welcome their son in October 2010. When he was 11 weeks, Jamie’s maternity leave was coming to an end, so before returning to the office, she went to see her medical oncologist. During the appointment, her doctor and she decided she should have a scan just to make sure everything was fine. Unfortunately, the scan showed that the cancer had metastasized, spreading to her liver and pancreas. Jamie was diagnosed with stage 4 melanoma in January 2011.

The standard treatments available at that time were not promising: Stage 4 melanoma was resistant to chemotherapy, and the response rate to high doses of interleukin-2 (IL-2) was only 5%. Jamie decided to pursue clinical trials. Both she and her husband worked in clinical trial recruitment, so they understood clinical trial treatment plans and knew that a clinical trial was her best chance of receiving an innovative treatment.

Over the next couple weeks, Jamie again consulted with several experts to learn about their research and to hear what they recommended. She also spoke with four major research facilities, including the National Cancer Institute (NCI). She was screened and eventually selected for a trial at NCI using tumor infiltrating lymphocytes (TIL) therapy.

At Jamie’s first appointment, she showed her medical team a photo of herself with her son at 11 weeks to emphasize this message: “I don’t care about the side effects. I don’t care what it takes to get there.... I want to kill this cancer and be here for this child [who] I just willed into being and now I’m responsible for.”

As Jamie’s treatment began, she hung a photo of her young son on the wall opposite her bed. To her surprise, all the nurses who regularly entered her room knew not only her name but his name as well. She learned that after her first appointment, her doctors had shared the photo and her message with the team, with these additional words: “This woman is checking in with us tomorrow, and we’re going to save her life.”

To begin the treatment protocol, Jamie first underwent a biopsy so the team could isolate TILs from her tumor site. The TILs were then stimulated to multiply in the lab. While the team waited for the TILs to grow, Jamie received IL-2 treatments at NCI, which required daily neurological assessments because of the severity of the side effects. Once the TILs had expanded sufficiently, they were infused back into Jamie, a type of adoptive cell therapy. At times, Jamie’s treatment was grueling, but she approached it with positivity and the determination to survive. She went into each treatment with the mindset that NCI would cure her cancer.

Jamie was amazed by the care she received. “I was a partner in the research process from day one. I was not a patient, I was not a data point, and I was not somebody [who] was helping them with their trial. I was a patient, and they were going to save my life.” Jamie also found other benefits to her participation in the trial. “Just being involved in that level of my own health care and in that level of proactive partnership was so empowering and so helpful to me emotionally to be able to feel really good about my care plan and what I was undergoing.” To raise awareness of clinical trials, she blogged about her experience at NCI in real time. People diagnosed with melanoma and given the same original, dismal treatment options reached out to her.

When Jamie had her first scan revealing no evidence of disease, her doctor, NCI’s Steven Rosenberg, MD, PhD, said it was a miracle. But Jamie knew it was the result of his and the team’s hard work and commitment to curing cancer.*

Although Jamie’s family was her motivation to push through even the most difficult days, her research team was a main source of support during her treatment. They would often spend time with her in her room, watch funny shows with her, and keep her company. Jamie still considers some of them to be her closest friends. When her participation in the trial ended, now more than 10 years ago, she initially felt like it was letting go of a lifeline. She didn’t know what to do next, and she struggled to find her new normal. “All of my personal hurdles were about navigating how to exist as a person with cancer in the world and as a new parent.” For example, the timing of some of her son’s childhood vaccinations had to be delayed because Jamie couldn’t be exposed to live vaccines at the time.

Jamie found her stride and became an advocate for other cancer survivors. She continued to hear from people who read her blog and reached out to her for advice. Jamie realized how much work needed to be done to get information about clinical trials to anyone faced with cancer. Her life’s passion and driving force is now to make sure that other people diagnosed with cancer know about clinical trials and what the process involves. “A clinical trial is not a last-ditch effort. It is your best opportunity to get the most cutting-edge research available now. Any conversation about clinical trials needs to happen right away. Not after you’ve exhausted everything else that’s available.”

Jamie wants cancer survivors to know that they are in charge. “You have to be your own health advocate. You have to be proactive about your health, and you cannot worry about questioning your doctor.... You need to bring up new information. You need to get as many opinions and as much feedback as you need to feel 100% confident in making your treatment decision.”

Jamie also wants doctors to know that it is okay to admit when they aren’t the best person to handle a patient’s case. “And please know that when you do refer us out, that we see you as heroes in our care. We see you as playing a very active role in our care and our survival, because of the fact that you’re able to say, ‘This is the best thing that can save your life right now, and maybe it’s somebody other than me.’”

Jamie looks back on her cancer journey with these words: “This is a terrible, terrible experience; however, there’s so much beauty in here, too. The support and the love that flows forth from this experience are the parts that you get to keep with you forever.”