On Saturday, November 16, 2019, the Cancer Research Institute (CRI) held its first Immunotherapy Patient Summit in Baltimore, in collaboration with the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, and the last in our 2019 series.
As always. the morning began with a warm CRI welcome to the 115 patients, caregivers, and advocates attending. After a brief overview of the day, Brian Brewer, CRI's director of marketing and communications, introduced our first speaker.
Dr. Elizabeth M. Jaffee, deputy director of the Sidney Kimmel Comprehensive Cancer Center, presented the basics of the immune system to ground the audience in how scientists and clinicians are taking advantage of its natural abilities to fight cancer. She reflected on how rapid advances in immunotherapy have been in the past decade: “We are at a time like no other. We've had now over 30 FDA approvals for multiple indications in different cancers.” She noted the growing challenge of managing data, and the need for interdisciplinary work with bioinformatics to inform immunology research.
Dr. Elizabeth Jaffee discusses the basics of immunotherapy. Photo by Melissa Lyttle.
Dr. Jaffee then moderated a panel with Drs. Marijo Bilusic (National Cancer Institute), Ranee Mehra (University of Maryland Greenebaum Comprehensive Cancer Center), and Suzanne Topalian (Hopkins Kimmel) on the latest scientific and clinical research in immunotherapy. Dr. Topalian noted that 10-15 years ago survival for melanoma was around 5%, but today, with the advent of anti-CTLA-4 in combination with other therapies, durable survival rates have increased up to to 50%. Dr. Topalian talked about how exciting it feels to have immunotherapy as a first-line option for patients. Dr. Mehra added that the rapid advances in immuno-oncology also required healthcare professionals to stay up-to-date on current treatments, educate themselves, and learn how best to explain these options to their patients and caregivers.
Immunotherapy Research Updates Panel: Drs. Elizabeth Jaffee (moderator), Ranee Mehra, Marijo Bilusic, and Suzanne Topalian. Photo by Melissa Lyttle.
After a thorough review of the doctors’ changing practices, it was time to learn about a patient’s experience. Adrienne Skinner, a CRI ImmunoAdvocate, shared her story.
In 2005, Adrienne learned that she had Lynch syndrome, an inherited mutation of the mismatch repair DNA pathway that significantly increased her risk for several types of cancer, especially cancers of the colon and uterus at an early age. She had regular colonoscopies and other procedures in an effort to detect cancer early. However, the cancer went undetected, and in 2013, she was diagnosed with metastatic ampullary cancer, a rare cancer of the small intestine’s duodenom. Thirteen months of chemotherapy, which did not work, took a toll on her body.
When genomic testing of Adrienne’s tumor showed that it was microsatellite instability-high (MSI-H), her oncologist recommended she enroll in an immunotherapy clinical trial. Although she was turned down for the first immunotherapy clinical trial she tried to enroll in, she “wouldn’t take no for an answer.” She continued to search, and eventually found another trial, testing the PD-1 pathway inhibitor, pembrolizumab (Keytruda®), at Johns Hopkins. Adrienne was grateful to enroll in the trial, and took an early train to Baltimore every couple of weeks. Within just two months of treatment, a biopsy showed that her cancer was completely gone.
Throughout treatment, Adrienne explained that she had minimal side effects and was able to maintain an active and busy lifestyle—balancing treatment, work, and raising her four daughters. She continued to receive treatment for two years, and today, over three years since her last treatment, she remains cancer-free.
Adrienne Skinner at the Baltimore Immunotherapy Patient Summit. Photo by Melissa Lyttle.
Adrienne wrapped up her presentation with several key takeaways for attendees:
- Cancer treatment is a journey: Make sure you are exploring all roads.
- Become educated: However, trust but verify your sources.
- Remember there are thousands of people who are working to help you: Your experience is important in ways you may never know. Help the process of improving results for all.
- Persistence and positivity makes a difference.
- Take control where you can.
- Marshall your support team.
“It is wonderful to be encouraged by passionate professionals and patients," noted one attendee during lunch. Speakers sat alongside the patients, caregivers, and advocates at lunch to further discuss lessons from the morning and possible next steps in their journeys.
Summit attendees discussing the morning session over lunch. Photo by Melissa Lyttle.
During the afternoon, recalling Adrienne’s presentation, Mr. Brewer encouraged attendees to be bold in asking questions and getting information and details from their healthcare teams in a brief myth-busting talk about clinical trials.
Mr. Brewer then invited Vanessa Brandon, Donna Lynch, and John Ryan to discuss their experiences with immunotherapy on the Patient Perspectives Panel.
Moderator Brian Brewer (left) with panelists (left to right) Vanessa Brandon, John Ryan, and Donna Lynch. Photo by Melissa Lyttle.
Vanessa Brandon, who was diagnosed with metastatic colorectal cancer in 2014, described how she felt when she was told that there was “nothing else that could be done” after surgery and a grueling course of chemotherapy. After a second ineffective course of chemotherapy in Chicago, Vanessa’s son found a promising immunotherapy trial at the Johns Hopkins Bloomberg~Kimmel Institute for Cancer Immunotherapy, which was just down the road from her home. Attendees clapped as Vanessa described the elation she felt when she learned that her tumor was MSI-H, “matching up perfectly” for a clinical trial at Johns Hopkins that was testing a PD-1 pathway inhibitor.
Vanessa pointed to her daughter, Keara, her son, friends, and church group, several of whom were in the audience, who helped to support her physically, emotionally, and financially throughout her treatment. She told attendees, “Do research and get information about your disease. You are in charge of your journey and your life. Get everything that you need so that you can get better.”
Today, almost three years after beginning immunotherapy, Vanessa’s tumors have shrunk by 66 percent. She has returned to volunteering for organizations in her community, including her church, and especially enjoys cooking for her family and spending time with her five grandchildren. Vanessa looked toward Dr. Jaffee in the audience as she noted the “amazing scientists” at Johns Hopkins who are working toward a future in which immunotherapy will be an option for every cancer patient.
Vanessa’s friends, family, and support team at the Immunotherapy Patient Summit. Photo by Melissa Lyttle.
John Ryan, diagnosed with stage 4 adenocarcinoma non-small cell lung cancer (NSCLC) in 2013, agreed with Vanessa wholeheartedly. He described how impressed he was with the collaboration between his oncologists at the Walter Reed National Military Medical Center with those at Johns Hopkins Medical Center, who were able to provide John with an anti-PD-L1 immunotherapy that saved his life.
At the time John enrolled in the trial, he was feeling fatigued and weak from four cycles of chemotherapy which had been ineffective. John described how his oncologist at Hopkins, Dr. Julie Brahmer, answered his questions before he entered the immunotherapy trial. He echoed Vanessa, and implored attendees: “Don’t worry about being humble. You need to think positive and get to where you need to be.” Similar to Adrienne, within two months of his immunotherapy infusion his tumor had shrunk by 65 percent. Six months later, his tumor had shrunk by over 82 percent.
Today John feels like “the luckiest man alive” and is getting back to his life. Having retired from a thirty-year naval career, John now looks forward to serving as a consumer reviewer for Walter Reed on lung cancer research program boards. He enjoys spending quality time with his wife, enjoys reading, remains active in his church, and always looks forward to vacationing with his children and grandkids. He said, “I am working on myself—trying to focus on the good in each day. My intention is to die of old age.”
John Ryan at the Immunotherapy Patient Summit. Photo by Melissa Lyttle.
Donna Lynch also discussed the importance of focusing on the good, and “knowing you’re going to get through the day.” Donna, having survived diffuse large B-cell lymphoma, a fast-growing non-Hodgkin cancer, acknowledged the outstanding medical staff, doctors, and nurses at the University of Maryland Medical Center (UMMC) as the reason she is here today.
Donna, similar to both Vanessa and John, had undergone chemotherapy shortly after her diagnosis in 2017, which had failed to keep her cancer at bay. In 2018, when the cancer came back, she was told that the standard of care would be a harsher chemotherapy and a stem cell transplant (SCT) if she was eligible. Donna explained that during her SCT evaluation, she learned about an immunotherapy clinical trial that would allow her to skip the standard of care and instead receive chimeric antigen receptor (CAR) T cell therapy, which involves extracting a patient’s own immune cells, genetically altering them to target specific markers found on cancer cells, and then reinfusing them back into the patient so that the immune system is able to fight the cancer.
Donna, with the support and encouragement of her husband and two children, enrolled in the trial. After the CAR T infusion she experienced a dangerous side effect called cytokine release syndrome and was in the ICU for five days. Donna’s family, friends, and church group helped her to get through this difficult time. Donna recalls, “there were prayers for me from day one.” Today, more than a year later, Donna is cancer-free and has regained her strength.
Donna Lynch at the Immunotherapy Patient Summit. Photo by Melissa Lyttle.
The day came to a close with four breakout sessions focusing on genitourinary cancer, lung cancer, melanoma, and general immunotherapy research. The breakout sessions allowed attendees to take a deeper dive into questions with Drs. Bilusic, Jaffee, Mehra, as well as Megan Schollenberger, MSN, CPRN, who led the melanoma and immunotherapy breakout session.
Dr. Mehra discussed how treatments combining immunotherapy with other approved treatments (surgery, chemotherapy, radiation) were very promising for lung cancer. She also emphasized that everyone with stage 4 lung cancer should undergo genomic testing as part of standard of care, which is covered by insurance.
One attendee asked about ways that lung cancer patients and caregivers can help to reduce the stigma associated with lung cancer. Dr. Mehra explained that the first step is improving medical education. She talked about how she is teaching medical students at the University of Maryland and is hopeful that these efforts to educate future healthcare professionals will help to improve bedside manner.
Ron Simmons, an attendee who was diagnosed with NSCLC in 2013 and has no evidence of disease after an anti-PD-L1 immunotherapy, added, “We have an opportunity as lung cancer survivors to advocate for others. There is an urgent need for us to educate others about immunotherapy clinical trials, and to get out there and raise funds for lung cancer research. Use your voice.”
Ron (center) discusses the importance of patient advocacy in the lung cancer and immunotherapy breakout session. Photo by Melissa Lyttle.
Anytime during the day, outside the big hall, you could find small rooms with private meetings: clinical trial navigator appointments for attendees. After one appointment, an attendee remarked, “I just emailed my oncologist the clinical trials that the navigator shared with me, and she told me that one of them was a good fit. I feel hopeful and am so grateful for this summit.”
Summit attendees meets with a clinical trial navigator. Photo by Melissa Lyttle.
Thank you to our wonderful institutional partner, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, and to all of our sponsors and educational partners who helped to make the summit possible and promote it to community members in the Baltimore area. We’re looking forward to our 2020 CRI Immunotherapy Patient Summit Series.
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