A Journey Unlike Any Other: Jill Feldman

Patient Advoc_Spotlight

My story started long before I was diagnosed. When I was 13, I had lost two grandparents to lung cancer within weeks of diagnosis and within weeks of each other. Six months after losing his own father, my dad was diagnosed with lung cancer, and he died three months later at the age of 41. There was a 10-year reprieve and then my mother’s sister was diagnosed with stage 1 lung cancer. She had surgery and was considered cured. Two years later, right before my wedding, they found another lung cancer on the other side. She had a lobectomy and was considered cured. Just two years after that my mom was diagnosed with lung cancer and died three months later at the age of 54. Less than a year after my mom died, my aunt developed a third lung cancer. Unfortunately, she didn’t have enough lung capacity to survive another surgery, so that lung cancer killed her one and a half years later. 

At the time my mom died, I was 28. After losing my dad, losing my mom was literally my worst nightmare come true. I decided at that point to start getting periodic CT scans because, although there was no research at the time on hereditary lung cancer, I knew that there was no way that all of these occurrences of lung cancer in my family were a coincidence. I didn’t want my children to ever have to go through what I went through, and I was really struggling with the loss of so many loved ones.

Coincidence or fate, my husband and I moved from the city to Deerfield, IL and the LUNGevity Foundation, which was the first non-profit in the country dedicated exclusively to lung cancer research, was located there. I got involved with advocacy work because I needed to find a way to confront the disease that devastated my family. It allowed me to define the role that lung cancer was going to have in my life, and it still does that for me today. Early in my advocacy work, everything I had done was because of lung cancer—there was no running away from it. It would’ve been foolish to think that no one else in my family would have been diagnosed, but I didn’t think it would be me.

In 2009, I was diagnosed with stage IA lung cancer. It had shown on one of my periodic scans as a nodule and, for some reason, I wasn’t worried. We watched it for a few years before it took a turn and changed. At that point, I was president of LUNGevity. I had surgery and was considered cured.

At that time, there was some research regarding use of erlotinib as adjuvant therapy for patients with EGFR-mutated lung cancer after surgery. The clinical trial was on the East Coast, so I couldn’t participate, but I took erlotinib for 15 months off-label. I technically wasn’t even a candidate for adjuvant therapy, but I needed to be able to look my kids in the eyes and say that I did everything in my power. It was the only time in the past 11 years that I haven’t had cancer. Approximately eight months after I went off erlotinib, the cancer came back. 

I had another surgery two and a half years later because the cancer was in a different area, and the doctors thought that it might be a new primary cancer. It was another EGFR-positive stage 1A lung cancer. But when I went for my first follow-up scan in January, there was another finding on the scan; when I went back in April, there were two more findings. At that point, they looked more closely at the two cancers that were resected and determined that it was the same EGFR cancer, but the only systemic therapy at that time was still erlotinib (they were just about to approve afatinib). Personally, the side effects I experienced from erlotinib were very quality-of-life inhibiting. Although there wasn’t any research at that time for using SBRT for intrapulmonary metastases, we did it for three unruly cancers. It kept me off of systemic therapy for close to five years.

I had progression about two years ago and after a prudent discussion with my team, we all agreed that it was time I went back on systemic therapy, with osimertinib. The truth is that it really was the first time in the 10 years that I had been dealing with the disease that I was not overcome with fear. This was such a durable option, and I knew things were in the pipeline, and I felt like I had the upper hand over the disease. Before this point, I had to keep erlotinib in my back pocket—there was nothing else.

When I look back at my treatment journey, I started off believing that I was going to be the “Poster Child of Hope”—the spokesperson for early detection. I felt like the disease recurrences were almost me letting the advocacy community down, and that was very hard on multiple levels. Once I changed my mindset and realized that hope is relative—it looks different at different times during your care—I was able to realize that I am a success story. I always say that, although early detection didn’t result in a cure, it allowed me to take treatment holidays and manage the cancer in a way that worked for me.

The Evolution of Advocacy

In advocacy, you start out advocating for yourself. Our diseases are all different, but our goals—to survive and advocate—are the same. Then you move to patient advocacy, which can look like many different things. You could take part in an event, mentor, or fundraising—the options are numerous. The steps for advocacy are usually: engage, educate, empower. The next step to patient research advocate can be very scary and intimidating. There is there gap in communication among scientists, clinicians, and patients, but programs such as STARS are working to close these gaps. And understanding that you, as the patient, have something that the researchers don’t, which is the lived experience, is a great confidence builder. 

Patients who are interested in being research advocates should know that they don’t necessarily need to understand the science. That’s not our job. Our job is to critique the science based on our experiences and goals. If you, as a patient research advocate, see a project that requires blood draws weekly, for example, then no matter how great the science is, it’s not an acceptable approach. Our input makes the research and its results more relevant and meaningful to the beneficiary, which is the patient. The whole point of research is to prolong and better our lives; we need to be involved so that the researchers know what is meaningful and important to us. 

For those interested in research advocacy, I encourage them to get on Twitter, which is where you’ll meet the friendliest and most outgoing scientists and clinicians, which will also boost your confidence. 

How Does IASLC Fit with Advocacy and Advocacy Groups?

I think IASLC has been nothing but patient centric. They truly really care about the patient voice and the patient involvement. They really have always been the only free conference for patients, which demonstrates their commitment to collaborating with us. 

IASLC is the common platform for the patient advocacy groups. And, because lung cancer is a global disease, there are so many countries where we were when I was first diagnosed. There is no reason that they should have to reinvent the wheel. The IASLC Patient Advocacy Committee is trying to understand the needs of these countries and provide support. 

Personal Joys, Triumphs

When I stepped down from LUNGevity’s board, it was because I wanted to advocate more broadly. Helping newly diagnosed patients and their families with the rollercoaster ride in a deep dark tunnel is one of the most meaningful things I do. Now patients are living longer, so the opportunities for advocacy are increasing. This is really all new. We’re all just figuring it out together, and it’s not a straight path. What I love about lung cancer advocacy is that, because it’s so new, there are so many opportunities in so many different directions. 

As an advocate, the inclusion of patients as partners was an amazing milestone. Research will only move in the right direction when patients are engaged. I was inspired to move toward research advocacy by Janet Freeman-Daily, who spoke at IASLC’s 2016 North America Conference on Lung Cancer, and she really was the trailblazer regarding patients getting involved in research. I myself had recently gotten involved in the lung cancer peer-review panel for the Department of Defense (DOD). During one of the DOD conversations about biomarkers, I remember one clinician saying, “Let’s face it—it’s like trying to find a minnow in an ocean.” It was disheartening, but as time went on and after a few conversations with researchers who told me that I helped them change their perspectives, I realized how important patients’ voices are in research. I remember one scientist telling me very sincerely that I was lung cancer’s biggest nightmare, which was the biggest compliment anyone could give me. That is exactly what I want to be! 

But my real success milestones are personal, My dad died a few weeks before I graduated 8th grade, and my first goal was to see all four of my children graduate 8th grade, which I’ve done. And I’ve also seen two of my kids graduate college!

What Will Tomorrow Bring?

When I first got involved in advocacy, I could count on one hand how many trials there were. Research moved at a snail’s pace, but it sped up within the past decade. The past five years brought exciting developments, but the past year was mind-blowing. The understanding of the biology of the disease combined with drug development has advanced tremendously. Historically patients didn’t live long, so no one thought about quality of life or survivorship. I think patients raising their voices in unison saying, yes, I want to survive, but I also want to live, has been a true breakthrough and will hopefully inspire newer endpoints outside of overall survival. I also do believe that long-term effects will be a focus in research.