Karen’s Immunotherapy Story: Empowerment Through Education

Faced with a dangerous recurrence of triple-negative breast cancer, Karen Peterson took charge of her cancer narrative through education and self-advocacy.

When she was initially diagnosed with stage 1 triple-negative breast cancer in 2015, she underwent standard treatments, including surgery and chemotherapy. She was declared cancer-free, but she knew there was a strong likelihood the cancer would return.

Throughout the following year, Karen researched other treatment options and talked to experts. In 2017, the cancer returned, and this time it was metastatic. She was confronted with a life expectancy of 18 to 24 months. She decided not to undergo chemotherapy again because she knew there were more promising treatments out there. She researched clinical trials and eventually found a phase 1 trial for which she was eligible at NYU Langone’s Perlmutter Cancer Center combining bempegaldesleukin (NKTR-214/BEMPEG) and nivolumab (Opdivo®). Her first CT scan, after eight weeks of immunotherapy, revealed a 72% reduction in tumors.

In June 2020, Karen’s oncologist declared her “an official complete responder.” Her cancer immunotherapy experience has impassioned her to become a patient advocate and educator. She joined the CRI ImmunoAdvocate team this year with a goal to empower cancer patients to seek out second opinions and advocate for themselves. She hopes that her advocacy work will help others learn about immunotherapy and cancer clinical trials.

On October 2, Karen will be sharing her experience on the Patient Perspectives Panel at the first CRI Virtual Immunotherapy Patient Summit. We had the opportunity to speak with Karen before the summit to discuss her advocacy work.

Karen Peterson. Photo by Pamela Carter-Fields of Sacred Moon Photography

CRI: You have shared your story at conferences and in countless interviews and publications. What impact do you hope your voice has on the cancer community?

Karen: In 2019, I spent a lot of time talking to cancer researchers—trying to bridge the gap between clinical trial design and the normal, everyday patient experiences. I implored clinical researchers to think about the cancer patients they are serving. They wanted to hear what I have to say. That feeling of reciprocating their valuable work by sharing my experience with them is a beautiful thing.

When I am talking to my peers, to other cancer patients, I try to empathize and give them hope. I'm a prime example of why cancer research works—I am alive because of it.

I grew up in the South Bronx, in New York City. I live in Harlem. Yes, I'm gutsy. Yes, I am resilient. Yes, I am a lot of things, but I was not born with a silver spoon or had connections, anything special, that would have given me an advantage. I'm your everyday woman who is a self-taught advocate, an underdog, that's what makes this story so intriguing.

I empowered myself through education. I am a rebel who refused to accept substandard care. I was able find this trial and that is why I am here today.

My goal is to inspire and empower others to take charge of their medical narratives and to give them strength. I want people to know that this story is not fake – it’s not made up. This actually happened. So, it gives me joy to be able to share this with others and give hope.

CRI: After your reoccurrence, your doctor recommended chemotherapy, but you decided to seek out a second opinion and enroll in a clinical trial. What was it like navigating treatment and advocating for yourself?

Karen: I went through a lot between 2015 to 2017 when I was first diagnosed that prepared me very well to handle my care and advocate for myself when my cancer reoccurred. That’s a whole other story! In short, by the time my cancer reoccurred, I decided that I was going to take complete charge of my narrative.

So, I was decisive and very quick with divorcing my original team. And it was horrid. It was isolating. It was lonely. I had to dedicate a lot of hours to research before I divorced them because I needed to make sure that what I was doing was non‑emotional and science‑based.

I searched for second and third opinions because I had the feeling that there was more to be had—that maybe there was other research at the time that I wasn’t privy to. So, I approached researchers saying, “Hey, would you talk to me about that?” When I got pushback, I did more research and armed myself with information.

I also read about women who had survived breast cancer with immunotherapy and researched where they went for treatment. It was important to know who had walked before me. I needed to know, how did you get into a clinical trial? What was the process? The only way I could know that was to talk to somebody who had actually gone through it.

I talked to peers, read articles, continued to talk to researchers, and it just snowballed. When I went back to my original oncologist she could see that this wasn’t the same Karen that she knew in 2015/2016 and early 2017. I had made a 180.

So, it was ultimately very empowering, but at the very beginning it was isolating and a lot of dedicated hard work.

CRI: What advice would you give to patients and caregivers who have just started this journey of research and self-advocacy who may feel isolated?

Karen: My advice to patients and caregivers is, first and foremost, become educated. That may just be as simple as understanding and getting comfortable with your pathology report because it’s scary. At first, I did not know what anything on my pathology report meant. So, just taking a moment and embracing the fear and going, “All right, let me just research every word in this report and I will eventually feel comfortable with it.”

Then, just take a little look, a glance, at the latest research. Try to take a science-based approach—when you’re just a little bit more informed you feel less isolated and more empowered.

Research becomes overwhelming in most cases. I understand that. One of the best things that you can do is to ask for help. You can meet with a social worker in your local clinic, call one of the national helplines, or seek out a patient navigator or a clinical trial navigator, because you don’t have to walk this walk alone. I did it but it’s not something that I would recommend for anybody at all.

CRI: When we first spoke, you discussed the importance of raising awareness about cancer immunotherapy and, in particular, clinical trials in African-American communities. I’d like to hear more about why this issue is essential from your perspective and ways the scientific and medical community can support this crucial inclusion work.

Karen: This is always my favorite question because I don’t get asked this a lot, and so I thank you for asking it. First of all, I'm living proof, period, that clinical trials in cancer research work, and I'm African American.

African Americans have the highest death rate and lowest survival rate of any racial or ethnic group in the U.S. for most types of cancer.

Let’s see—I read an article in the Annals of Internal Medicine that researchers found in study from 2014 to 2018, that only 7.44 percent of 61,763 patients enrolled in clinical trials that resulted in subsequent U.S. Food and Drug Administration (FDA) approval, were African American. Now, they broke it down into the participation to prevalence ratio (PPR). For African Americans, the PPR was 0.31 for all cancers, and was even lower in cancers that are more common for African Americans, like breast cancer (0.29), prostate cancer (0.18), lung cancer (0.15), and hematologic cancers (0.12).

So that’s just missed opportunities across the board. We are underrepresented. It’s a travesty and there are a whole lot of reasons why. My personal opinion is that the pharmaceutical companies and clinical researchers need to have an uncomfortable conversation that is way overdue.

That conversation, of course, has to do with an unaddressed and largely unacknowledged history of abuse and exploitation. Tuskegee has to do with it. Henrietta Lacks has to do with it. Those are the two biggest cases when you think about why we don’t participate in clinical trials. Because of the mistrust, our community, the African-American community, is always going to side eye. In other words: You’re all lying to us. We do not trust you.

That is one of the reasons why you get this huge gap. There is institutional bias that is built in. We feel that we don’t have the support.

So, what can the medical community do to support African-American participation? Have the uncomfortable conversations. Respect your audience. Fund African-American scientists and create more programs that include and encourage us to become scientists or doctors. Invite African-American patients and survivors to speak at events, especially if it’s an event in our community.

When you research and read about the stories and clinical trials, you don’t see a lot of African Americans represented. There aren’t many patients or survivors like me. I would like to meet another person who has done well on a phase 1 clinical trial who is also African American. I haven’t yet.

Sharing stories can help bridge the gap.

CRI: How did you build trust with your new health care team at NYU?

Karen: I must say, the person I trust most is my principal investigator at NYU Langone, Dr. Daniel Cho. He was the one who picked up the phone and told me about the clinical trial that saved my life. I have a couple of doctors here and there, but he is number one when it comes to how I decide in regards to managing my healthcare.

Our trust was an earned trust. He’s very humble. He is all about doing his job and saving lives.

Being able to work directly with your principal investigator is unprecedented and not something I take for granted. Usually you go through so many layers of gatekeepers.

He told me, “You have the Jimmy Carter effect,” and I said, “Oh, yeah, everybody knows that Jimmy Carter drug,” and he was like, “Yeah, everybody knows that Karen Peterson drug.”

Read Karen’s Story in the ImmunoCommunity

Join the first CRI Virtual Immunotherapy Patient Summit on October 2-3, 2020, to hear Karen’s story. Register for free today and book a confidential clinical trial navigator appointment when you reserve your spot.