How Immunotherapy is Reshaping Cancer Patient Survivorship Experiences

Cancer veterans Kristin (leukemia), Sunshine (lung cancer), and Brendan (melanoma) share their experiences with cancer diagnosis, immunotherapy clinical trials, and survivorship. #CIM21

Three CRI ImmunoAdvocates discuss redefining and navigating their lives after immunotherapy. Guest moderator Kristin speaks to Brendan and Sunshine about their unique cancer survivorship experiences, including the management of long-term side effects, continued self-advocacy and self-education, and their long-lasting relationships with their health care teams.

02:11 - What does the word "survivorship" mean to you?
4:44 - What has the word “cure” come to mean to you in the context of your journey?
7:43 - How does it feel to know that through your clinical trials you were part of important work that led to the approvals of immunotherapies that now benefits many others?
11:54 - How did your medical team help you better understand what immunotherapy is and what informational resources have you found helpful while living life after immunotherapy?
20:05 - What have been the greatest challenges you have faced that you didn’t expect during immunotherapy treatment or since?
26:05 - With how new immunotherapy was when we got it, there weren’t a ton of resources, but have you discovered anything along your survivorship journey that you’ve found helpful and wished you had known about or had access to earlier? Have you participated in any support groups, or become aware of any that others might be useful for others?
29:39 - Has financial toxicity been a challenge during your Survivorship journey? If so, are there any resources that you can share?
35:21 - How has cancer and immunotherapy changed your approach to your health, as far as paying attention to other problems or making efforts for preventive care?
39:39 - Did you ever have to stop immunotherapy to give your body a break? Are there immunotherapy side effects that remain a challenge for you?
43:39 - Why do you think it’s important to have open communication with your medical team throughout your treatment journey and beyond?
49:05 - What advice would you give to someone newly diagnosed?

In 2010, Kristin Kleinhofer was diagnosed with acute lymphoblastic leukemia and began a two-year journey of inpatient, intense chemotherapy that ultimately failed to keep her in remission. She enrolled in phase 1 clinical trial of CAR T cell therapy. She was among the 93% of patients in her trial that achieved remission. https://www.cancerresearch.org/patien...

Brendan Connors is an adventurer and metastatic melanoma veteran. In May 2010, he had a precancerous mole biopsied, but by November, his scans showed metastatic melanoma. After surgery, Brendan underwent two separate immunotherapy clinical trials. Having adventures to look forward to was crucial to Brendan as he coped with the emotional and physical taxes of cancer treatment. Upon turning 30 in 2013, he jumped out of a plane, ice climbed and hiked the Grand Canyon. Today, Brendan is focused on moving forward one gear at a time—being with family, including his daughter Emilia, born over the summer of 2020. https://www.cancerresearch.org/patien...

In 2011, Sunshine Pegues was diagnosed with stage 4 non-small cell lung cancer. Standard treatment at the time was chemotherapy followed by 35 days of radiation, which burned the skin on her neck and left her in more pain and skeptical about the advice of her health care team. She moved back to her hometown, Seattle, where she enrolled in two clinical trials. The second trial tested nivolumab (Opdivo), anti-PD-1 immunotherapy, which stopped her cancer from progressing and eventually, caused it to become inactive. https://www.cancerresearch.org/patien...

The “Cancer Immunotherapy and You” webinar series is produced by the Cancer Research Institute and is hosted by our senior science writer, Arthur N. Brodsky, Ph.D. The 2021 series is made possible with generous support from Bristol Myers Squibb and Alkermes.

Established in 1953, the Cancer Research Institute (CRI) is a 501(c)(3) nonprofit organization dedicated to harnessing our immune system’s power to control and potentially cure all cancers. Our mission: Save more lives by fueling the discovery and development of powerful immunotherapies for all types of cancer. To accomplish this, we rely on donor support and collaborative partnerships to fund and carry out the most innovative clinical and laboratory research around the world, support the next generation of the field’s leaders, and serve as the trusted source of information on immunotherapy for cancer patients and their caregivers. https://www.cancerresearch.org

Cancer Research Institute is a registered 501(c)(3) nonprofit under EIN 13-1837442. Donations are tax-deductible to the fullest extent allowable under the law.