Staying Informed and Empowered as A Patient with Cancer

One of the best defenses against the fear and uncertainty that can accompany a cancer diagnosis is knowledge. Finding the right sources of information, however, can be tricky, even daunting. But it doesn’t have to be that way.

Beyond the patient’s health care team — the oncologist, nurses and other specialists who treat and provide support throughout the cancer journey — peers can be an important source of knowledge. Other patients who share their experiences with cancer and treatment provide a vital and often helpful perspective.

In addition, groups like the Cancer Research Institute (CRI), a nonprofit organization that since 1953 has worked to advance the field of cancer immunology, can help fill the gaps by providing resources that are reassuring, inspiring and even lifesaving.

CRI has created a number of resources for patients and caregivers seeking information about immunotherapy. These include a website providing updates on the latest in research and drug approvals for more than 20 major types of cancer, a webinar series featuring immunotherapy experts, an immunotherapy clinical trial finder service and a series of patient story videos.

These resources can help both patients who are eligible to take Food and Drug Administration (FDA)-approved immunotherapies and those whose cancers don’t respond to standard therapies and must look to experimental treatment. Such treatments usually are found in clinical trials that are testing new drugs, treatment combinations or ways to administer them. Some drugs may already be approved to treat some types of cancer but are undergoing testing in others.

Because these treatments are new or not yet approved, less may be known about their potential benefits and risks compared with conventional therapies. Patients may have

a lot of questions: “Will it work for me?” “How will I know it’s working?” “How will it make me feel?” “What are the known side effects?”

Recognizing the value of its resources in answering these questions for patients and caregivers, CRI decided in 2016 to provide an additional forum through which cancer-concerned communities can connect with one another and with scientific experts at the forefront

of cancer immunotherapy: the CRI Immunotherapy Patient Summit Series.

Over the past four years, the CRI summits, which are free to attendees, have brought the science of cancer immunotherapy to thousands of patients, caregivers and advocates, explaining in clear, accessible terms how scientists are unlocking the immune system’s natural ability to fight cancer.

Importantly, the summits also feature keynote presentations and panel discussions centered on patients who share their experiences in learning about and receiving immunotherapy, participating in clinical trials and overcoming cancer.

At a recent CRI Immunotherapy Patient Summit in Houston, attendees heard from keynote patient speaker K.C. Dill, who described how researching immuno- therapy and listening to other patients’ stories on the CRI website inspired, informed and empowered her to take action after chemotherapy and radiation failed to keep her cancer at bay.

ONE PATIENT’S IMMUNOTHERAPY STORY

When Dill learned in February 2015 that she had stage 3 non-small cell lung cancer, she was devastated and feared for the future of her husband and two daughters. Just 40 at the time, she never imagined that she’d face the same rare type of lung cancer, adenosquamous carcinoma, that her mother was battling. Sadly, a few years later, cancer would take her mother’s life.

“Leaving the hospital that day and going to my mother’s house to tell her I had the same kind of cancer she had was the hardest thing I’ve ever had to do,” Dill said in an interview with CRI (cancerresearch.org/kc).

Because her cancer was so advanced, Dill was ineligible for surgery. Instead, she began an aggressive regimen of radiation and chemotherapy that left her feeling sick, fatigued and in pain. After 15 weeks of severe side effects, Dill decided she’d had enough and needed another option. Meanwhile, the cancer had progressed to stage 4, spreading to her lymph nodes. Dill realized her odds of survival were rapidly dwindling. She sought a second opinion and different course of treatment at Baylor College of Medicine in nearby Houston. There, she heard the word “immunotherapy” for the first time.

Dill’s oncologist at Baylor, Dr. Jun Zhang, explained that although no immunotherapy had yet been approved by the FDA for her type of cancer, there were indications that Dill might respond to treatment with a type of immunotherapy called checkpoint blockade — specifically, the drug Opdivo (nivolumab), which interferes with cancer’s ability to disable the immune system’s attack.

The drug had received FDA approval earlier that year to treat another subtype of the disease called squamous non-small cell lung cancer and showed promise in other types of lung cancer.

After her initial consultation with Zhang, Dill returned home, went online to learn as much as she could about immunotherapy and found CRI’s website. She watched videos and read stories about others with advanced lung cancer who had been treated successfully with Opdivo. “I thought, ‘Wow, if it worked for them, it could work for me,’” Dill recalled.

She decided to find out if immunotherapy could help her immune system fight the cancer. Through the drugmaker’s compassionate use program, Dill began receiving treatments every two weeks. She describes the experience as unlike anything she endured while receiving chemotherapy and radiation. “After my first treatment, I felt a little sore and had some flu-like symptoms, but I was able to work out the next day,” she said.

After the first few weeks, Dill felt better than she had in a long time. “I had color back in my skin. My hair was growing back. I had more energy,” she said.

Just how well Dill was responding to immunotherapy quickly became apparent when the first scans showed that her tumors had all but disappeared. By spring 2016, she had no evidence of disease and stopped treatment later that year. She remains in remission, enjoying time with her family and spreading the word about cancer immunotherapy as a CRI ImmunoAdvocate.

“Immunotherapy has given me hope,” Dill said. “There are so many people out there this can help. Other patients that had come before me inspired me, so that’s my hope — to let my experience help the next person.”

A VIRTUAL CONNECTION

In light of the COVID-19 pandemic and the unique risks and challenges it poses to patients with cancer, CRI has reimagined its in-person summit series as the CRI Virtual Immunotherapy Patient Summit.

The CRI Virtual Summit, which will take place in autumn 2020, promises to deliver the same high-quality, expert-curated information about cancer immunotherapy, along with inspiring, first-person accounts from patients. As with other CRI summits, this virtual event will include cancer-specific breakout sessions, allowing attendees to take a deeper dive into immunotherapy for the cancers that concern them most.

As cancer immunotherapy continues to become more widely available, CRI will continue to bridge the learning gap by providing trusted information for patients, caregivers and advocates. Meanwhile, CRI remains committed to funding promising research in immunology and immunotherapy so that, someday, all patients with cancer might be able to experience the potentially lifesaving benefits of this new treatment approach.