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A Powerful Community of Patients, Caregivers, and Advocates Gather at the Cancer Research Institute Immunotherapy Patient Summit in New York City

September 08, 2019

As cancer patients and their families begin to self-educate and self-advocate, it is crucial that the medical community supports them as empowered decision-makers. Communication between patients, caregivers, oncologists, oncology nurses, and researchers is critical to improving the patient experience, as well as ensuring that all people living with cancer have the information they need to access immunotherapy treatments and clinical trials.

In 2016, the Cancer Research Institute (CRI) created the Immunotherapy Patient Summit Series to help inform the public on the latest advances in cancer immunology and immunotherapy. Each Summit provides a unique opportunity for patients, caregivers, and advocates to meet each other, hear from cancer patients and survivors, and engage with field’s leading physicians and scientific experts.

On Saturday, September 7, 2019, CRI brought its Immunotherapy Patient Summit to Perlmutter Cancer Center at NYU Langone Health. CRI chief executive officer and director of scientific affairs, Dr. Jill O’Donnell-Tormey, welcomed over 275 patients, survivors, caregivers, advocates, and healthcare professionals in attendance. She emphasized, “I hope that you collect valuable information from our speakers that will help you advocate for yourself or your loved one as you explore immunotherapy treatment options and determine, with your doctors, whether it is an option for you.” 

Attendees at the Cancer Research Institute Immunotherapy Patient Summit in New York City. Photo by Hannah Cohen.
Attendees at the Cancer Research Institute Immunotherapy Patient Summit in New York City. Photo by Hannah Cohen.

Next, Dr. Ben Neel, director of Perlmutter Cancer Center, shared valuable information with attendees about Perlmutter Cancer Center’s immunotherapy clinical trials. As a physician-scientist, Dr. Neel recognized the impact CRI has had on increasing the number of immunotherapy clinical trials available to patients. He explained that CRI has awarded a total of more than $10 million to over 70 NYU scientists during the past 50 years.

Dr. Ben Neel welcomes attendees to the fourth CRI Immunotherapy Patient Summit in New York City, held at NYU Langone’s Perlmutter Cancer Center. Photo by Hannah Cohen.
Dr. Ben Neel welcomes attendees to the fourth CRI Immunotherapy Patient Summit in New York City, held at NYU Langone Health. Photo by Hannah Cohen.

Dr. Vamsidhar Velcheti, director of thoracic medical oncology at the Perlmutter Cancer Center, then took the stage to present on the basics of the immune system and how scientists are working to harness its power to cure cancer. He highlighted recent advances in immunotherapy for lung cancer, explaining that the scientific community is trying to understand why immunotherapy has led to a higher rate of long-term survival for patients with advanced stage non-small cell lung cancer.

Dr. Vamsi Velcheti explains during his immunotherapy basics presentation how blocking a pathway on an immune cell can help activate the immune system to fight and eliminate cancer. Photo by Hannah Cohen.
Dr. Vamsi Velcheti explains how blocking a pathway on an immune cell can help activate the immune system to fight and eliminate cancer. Photo by Hannah Cohen.

Dr. Velcheti then moderated a panel with Drs. Sylvia Adams (NYU Langone Health’s Perlmutter Cancer Center), Claire Friedman (Memorial Sloan Kettering Cancer Center), and Gulam A. Manji (Columbia University Irving Medical Center) on the latest scientific and clinical research in immunotherapy. During the panel, Dr. Adams discussed the importance of understanding biomarkers to provide breast cancer patients with appropriate treatments. Dr. Manji pointed to the need for future research to determine the best way to combine immunotherapies with each other as well as with other treatments (chemotherapy, radiation, surgery) to extend its benefits to more patients.

Immunotherapy Research Updates Panel: Drs. Vamsi Velcheti (moderator), Gulam A. Manji, Claire Friedman, and Sylvia Adams. Photo by Chary Sathea.
Immunotherapy Research Updates Panel: Drs. Vamsi Velcheti (moderator),
Gulam A. Manji, Claire Friedman, and Sylvia Adams. Photo by Chary Sathea.

Mary Elizabeth Williams, a journalist and ImmunoAdvocate, shared her experience as a melanoma veteran. She reflected on ­­­­­how being diagnosed with cancer felt like “getting a ticket to a land where I don’t speak the language.” Summit attendees valued her honesty as well as her practical advice on coping with cancer, which included attending and participating in programs at Gilda’s Club NYC. Mary Elizabeth reflected, “I hope that you bring the same curiosity that brought you here today to your doctor appointments. You have the right to ask as many questions as you need."

Mary Elizabeth Williams discusses the importance of asking questions about immunotherapy with your healthcare team. Photo by Chary Sathea.
Mary Elizabeth Williams discusses the importance of asking questions about immunotherapy with your healthcare team. Photo by Chary Sathea.

Summit attendees continued the conversation with each other and with speakers over lunch. One attendee noted, “it was great to hear [Mary Elizabeth] share her experience, and to get to talk to her afterward. It helped me to feel a little less alone in all of this.” Another attendee explained that they didn’t know anything about immunotherapy before attending the morning session and was “surprised [to learn] how the different cells in our immune system can be used to defend our bodies against cancer.”

Throughout the day, attendees had the opportunity to meet confidentially with clinical trial navigators to review their medical histories, to learn about trials in which they may be able to enroll, and to find out how to contact trial coordinators.

Summit attendees meet with a clinical trial navigator. Photo by Hannah Cohen.
Summit attendees meet with a clinical trial navigator. Photo by Hannah Cohen.

Attendees gathered again for the afternoon session, which began with a presentation from Brian Brewer, director of marketing and communications at CRI, on demystifying clinical trials. Mr. Brewer then invited Dorothy Fabian, Oswald Peterson, and Tara Ryan on stage to discuss their experiences with immunotherapy.

Patient Perspectives panelists Oswald Peterson (left), Tara Ryan (center) and Dorothy Fabian (right). Photo by Hannah Cohen.
Patient Perspectives panelists Oswald Peterson (left), Tara Ryan (center), and Dorothy Fabian (right). Photo by Hannah Cohen.

Dorothy Fabian, who recently received nivolumab (Opdivo®) for esophageal cancer on a clinical trial at NYU Langone, explained that, for her, a cancer diagnosis felt like a death sentence, so she had no difficulty heeding the advice of her oncologist. She had never heard of immunotherapy treatment and was surprised to learn that there were options beyond chemotherapy and radiation. Dorothy reflected, “I braced myself for the worst, and was surprised when I got the best.”

Tara Ryan, who has been living with melanoma for four years, shared a very different experience. Her research into treatment options was like a 9-5 job. “Cancer changes your life—the way you think, the way you feel.” She changed everything she could in her life to ensure that she would be healthy enough to receive immunotherapy. Indeed, Tara was one of the early recipients of pembrolizumab (Keytruda®) for advanced melanoma. Within months of the first immunotherapy infusion, her tumors started to shrink.

Tara remains on immunotherapy treatment today and now has a desire to help other patients advocate for themselves. She started a new cancer support group for stage 4 cancer patients in her community in upstate New York.

Oswald discussed his experience with immunotherapy on the Patient Perspectives Panel at the Summit. Photo by Hannah Cohen.
Oswald (second from left) discusses his experience with immunotherapy. Photo by Hannah Cohen.

Oswald Peterson, a survivor of non-small cell lung cancer, acknowledged that many patients and caregivers experience barriers to proper cancer treatment. He reflected on his own experience seeking out care from a NCI-designated comprehensive cancer center: Columbia University Irving Medical Center. He encouraged everyone in the audience to (1) seek out an opinion from a comprehensive cancer center; (2) allow yourself to rely on your support system; and (3) do your own research and remember that you are an expert in your own experience.

The day closed with four breakout sessions focusing on breast cancer, gastrointestinal cancer, gynecologic cancer, and general immunotherapy research. The breakout sessions allowed attendees to take a deeper dive into questions with Drs. Adams, Friedman, Manji, and Velcheti.

Dr. Sylvia Adams and clinical research nurse Victor Ty, BSN(c), RN, met with patients to discuss breast cancer and immunotherapy. Photo by Chary Sathea.
Dr. Sylvia Adams and clinical research nurse Victor Ty, BSN(c), RN,
 met with patients to discuss immunotherapy for breast cancer. Photo by Chary Sathea.

Dr. Gulam Manji opened the gastrointestinal breakout session by inviting attendees to introduce themselves, and, if they would like, share what brought them to the Summit. When it was his turn to speak, he explained how grateful he is for opportunities like the Immunotherapy Patient Summit where he can listen to patient experiences, and hopefully, impart useful information and knowledge. During the session, he especially encouraged patients to seek out second or third opinions, reasoning, “if you’re making a change to your house, how many contractors are you going to have come and take a look?”

“At least three!” one of the attendees chimed in.

“Exactly,” Dr. Manji explained, “it is your body, and you know best what you are going through.”

Dr. Gulam Manji answers questions about relevant biomarkers pancreatic cancer during the gastrointestinal cancers breakout session. Photo by Hannah Cohen.
Attendees ask Dr. Gulam Manji about relevant biomarkers for 
pancreatic cancer during the gastrointestinal cancers breakout session. Photo by Hannah Cohen.

Thank you to our wonderful host and institutional partner, Perlmutter Cancer Center at NYU Langone Health, to our sponsors who helped make the Summit possible, and to our educational partners who helped promote it to community members in the New York City area.

The general morning and afternoon sessions were recorded and will be published on CRI's YouTube channel soon. 

We’re looking forward to our next Immunotherapy Patient Summit on October 26, 2019, at MD Anderson Cancer Center in Houston. We encourage you to register for a summit near you.

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