First Breast Cancer “Durable Regression” with Immunotherapy: Judy Perkins, Inspire member
On June 4, 2015, Holly Kitchen, a young mom with metastatic breast cancer, published a video that received over 46 million views in one week. Its message? “Metastatic breast cancer has no cure.”1 Exactly three years to the day, the National Institutes of Health announced that someone with metastatic breast cancer has been cured.2 Here’s her story.
Judy Perkins joined the Advanced Breast Cancer Support Community on Inspire in August 2013, shortly after her diagnosis with metastatic breast cancer. But her experience with breast cancer started in 2003, while working as an engineer and mother of young children (her oldest was only five). At age 38, Judy was diagnosed with stage 0 breast cancer. “I was told that I had a ‘precancerous” condition,’” she said in an email interview, last week.3
She had a mastectomy and complete axillary dissection as her treatment, she told a National Breast Cancer Coalition (NBCC) Advocate Leadership Summit in 2017. “At the time I was completely ignorant and believed that more is better, and apparently so did my surgeons,” she said. Two weeks later she was back at work. 4
“I didn’t think I was cured,” she told Inspire, “simply because I thought I hadn’t even had cancer. You can’t be cured of something you never had.”3
But everything changed in 2013, when she found a lump, and then received a diagnosis of stage IV disease. Her clinician told her that she probably had three years to live.4
“I was in terror and shock with this diagnosis,” she told the NBCC audience. Inspire, she said, made a difference. “It was nice to have the support and camaraderie of other people who were dealing with MBC [metastatic breast cancer] like I was,” she said. “Sometimes, I had practical questions about side effects. Other times, I could just commiserate or share in the dark humor that we enjoy.”3
At her NBCC presentation, she revealed her handle, adventureswithcancer** and said, “my motto is ‘don’t be a sheeple, people,’” referring to her own advocacy in learning about her disease.4 In her Inspire interview she said, “My advice for people diagnosed with breast cancer, or any other disease, for that matter, is to educate yourself and be your own advocate. It is your job to oversee your treatment and get the best that you can for yourself out of the system. Consider yourself an important part of the team and participate in your own care.”3
Judy went to a comprehensive cancer center in order to access clinical trials. She turned to Inspire members for guidance in dealing with side effects from her treatment. Unfortunately, none of the drugs her new oncologist at the University of Miami prescribed worked for long. “I quickly realized I was not going to be on the right hand side of that median curve,” she said. She got through 2014 having exhausted a dozen treatments and finally qualified for a clinical trial. This clinical trial treatment worked for six months, melting away her cancer, but she suffered from severe side effects which forced her to stop the treatment.4
At this point, she was “planning on dying” and almost didn’t go to a conference called Project Lead, NBCC’s science training program for advocates. At the last minute, she decided to attend, with life changing results. The instructor of the immunotherapy session, Dr. Stephanie Goff, told the group that she ran a clinical trial. “Of course, I immediately cornered her after class, over a beer, and forced her to tell me more about this trial,” Judy told the NBCC summit.4
Within a few weeks, she had enrolled. What made her application stand out? “I guess I was just the first one to qualify,” she said. “The main problem is that you have to have at least two tumors. One for the resection and one to watch to see if the treatment works. A lot of people have bone-only disease and don’t qualify. By the time they have the tumors (maybe in the lungs or liver), they may be starting to get too sick to qualify for the trial.”3
Dr. Steven Rosenberg, who Judy describes as “a man on a mission” supervises the NIH clinical trial program to forward cancer immunotherapies.3 The trial’s goal is to use Tumor Infiltrating Lymphocytes (TILs) for all solid metastatic cancers. A novel element of this trial (as compared to previous melanoma trials) is selection of TILs specifically targeting genetic mutations.Genetic testing on her tumor, when compared to her normal DNA, found about 300 mutations. Scientists selected TILs that attacked four of those mutations and grew 81 billion T-cells to be infused back into Judy (along with interleukin 2).4
Treatment came in the nick of time. According to Dr. Rosenberg, Judy had tennis ball sized lesion throughout her liver which probably would have killed her in the next two to three months.5
She told Inspire that she experienced no long-term side effects from the treatment (though several short-term side effects, mostly fatigue.) Seven to 10 days after the infusion, Judy could feel that her tumors were dissolving, within six weeks, the tumors were half their original size and and since May of 2106, the tumors have been gone.3
“I don’t experience survivor’s guilt,” Judy told Inspire. “However, since I have become more involved in BC advocacy, I now know a lot of people with cancer. So, I have lost more friends to cancer than I ever did before. It is very sad to get to know these people and watch them lose the fight.”3
Reflecting on this reality she said, “For people with Stage 4, I think that we still have to face the reality that, for most of us, we can be treated but not cured. Enter treatment with an open mind because some people enjoy some very long runs on treatments that don’t have bad side effects. There is a lot of magic out there for some people even with existing treatments. For example, I know a lot of women having very good results with Herceptin, Ibrance, and Femara. That said, you also have to accept reality and deal with WHAT IS. When the time comes, you may have to circle the wagons and just enjoy your remaining time with your friends and family. Hospice can be very helpful at that point.”3
Judy remains active in helping others on Inspire. “I have attended seminars given by MBCN [Metastatic Breast Cancer Network] and then by NBCC,” she said. “I attended Project LEAD and have participated in grant reviews with the BCRP [Breast Cancer Research Program]. As I have come to know more, I have tried to share anything new that I have learned. So, when I attended SABCS [San Antonio Breast Cancer Symposium,] I wrote a summary of what I learned. Every time I attend a conference or seminar, I keep in mind my friends at Inspire and try to post if I discover something relevant or interesting.”3
Judy shared her clinical trial information with Inspire members and two other members enrolled in the same TIL trial shortly after her. Unfortunately the treatment was not successful for them. Yet another member just got accepted to be part of the trial. “Assuming she passes the screening (e.g. has no brain mets or other disqualifying issues) she will have her surgery in July and will probably be treated in November.” She remains optimistic, “You won’t know how you will respond to a treatment until you try it.” 3
**Inspire does not reveal people’s names or associated handles to anyone. We share this here only because Judy Perkins herself disclosed it in a videotaped speech.
Editor’s note:
Kathleen Hoffman, PhD, MSPH will be at the DIA Conference (Boston) on June 26 presenting the poster, “Current Genetic Literacy, Perspectives and Experiences of Cancer, Chronic and Rare Disease Patients and Caregivers.”
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References:
1) Kitchen, H., (2015, June 4). Metastatic Cancer: The Real Deal…
[Video file]. Retrieved from https://youtu.be/QDQ0FjP7J-c
2) Zacharakis, N., et.al. (2018) Immune recognition of somatic mutations leading to complete durable regression in metastatic breast cancer, NATURE MEDICINE, 24, 724–730. Retrieved from https://www.nature.com/articles/s41591-018-0040-8.epdf.
3) J. Perkins, personal communication, June 12, 2018.
4) National Breast Cancer Coalition. (Producer). (2017). Advocate Leadership Summit: How can we understand and stop metastases. Retrieved from https://nsp.performedia.com/node/16793?&p=html5
5) Wong, S.(2018, June 4) Woman survives metastatic breast cancer thanks to new treatment. New Scientist. Retrieved from https://www.newscientist.com/article/2170679-woman-survives-metastatic-breast-cancer-thanks-to-new-treatment/.
