In an eye-opening moment at the Cancer Research Institute’s Immunotherapy Patient Summit on Dec. 9, an informal poll revealed the selectivity and other challenges presented by clinical trials.
The audience was asked if they had been diagnosed with cancer. Roughly 90 percent of a near-capacity ballroom raised their hands. That group was then asked if they had ever participated in a clinical trial.
Only a few hands remained raised.
The goal of the summit was to dispel some of the misconceptions of clinical trials and connect cancer patients to a research study that could significantly extend their life.
For nearly 65 years, the Cancer Research Institute (CRI) has supported efforts to develop new and effective immune-based strategies to treat and prevent cancer.
The nonprofit organization is at the forefront of what many researchers and oncologists consider the future of cancer treatment: Immunotherapy. The most recent summit, held in Tampa, was the fourth stop in a five-city educational series, bringing experts in the field of immunology to cancer patients searching for the latest treatment options.
Immunotherapy uses your body’s immune system to help fight disease. Immunotherapy drugs such as pembrolizumab (Keytruda) and nivolumab (Opdivo) have shown promising results in mesothelioma clinical trials, and numerous survivors credit immunotherapy for living far beyond their initial prognosis.
The goal of CRI is to make immunotherapy more accessible to patients of all cancers and increase the amount of patients eligible for clinical trials.
“Only between 3 and 8 percent of patients who are eligible to enroll in clinical trials ever do,” Brian Brewer, director of marketing and communications at CRI said at the Tampa summit. “That’s something we at the Cancer Research Institute want to change. It’s why we have this educational series and it’s why we work so hard to connect [patients] with clinical trial options.”
Immunotherapy at Forefront of Emerging Treatments
The buzz surrounding immunotherapy is at an all-time high, but the science behind the therapy dates back to the 1890s when Dr. William Coley developed a treatment based on provoking an immune response to bacteria.
“The idea that we can now manipulate the immune system is unequivocal, and the tumor effect is also unequivocal,” said Dr. Philip Greenberg, head of the Program in Immunology at the Fred Hutchinson Cancer Research Center in Seattle.
Greenberg explained there are 40 to 50 billion T cells in the human body, and there are roughly 1 billion different receptors. T cells use these receptors to recognize cells and distinguish healthy cells from foreign cells, such as cancer cells.
However, many cancer cells can deceive T cells into thinking they are healthy cells. Immunotherapy drugs essentially unmask the cancer cells and empower our body’s T cells to recognize and attack malignant cells.
Today, more than 2,000 immunotherapies are currently in preclinical or clinical development, according to a recent survey from CRI.
Most immunotherapy drugs on the market today target the inhibitory molecules PD1 and CTLA-4, but researchers are currently testing dozens of other molecules in clinical trials.
“We’ve just reached the tip of the iceberg,” Greenberg said.
Dispelling Myths About Immunotherapy
In one of the standout sessions at the Tampa summit, Brewer listed off common misconceptions about immunotherapy and clinical trials.
Some common myths include:
- Participants in a clinical trial may only receive a placebo or sugar pill instead of a treatment. This is only the case in trials where there is no standard of care available. “If there is a treatment available that could potentially benefit you, ethically, you will receive some form of treatment,” Brewer said.
- Immunotherapy trials are only for those out of options. While this once was the case — with immunotherapy given only to patients with advanced metastatic cancers — the therapy is now used in early stages of certain cancers. “We expect that trend is going to continue,” Brewer said.
- Patients must travel to large hospitals for trials. Many immunotherapy trials are available at smaller hospitals and clinics around the country as well as large regional cancer centers.
- Once you’re in a trial, you can’t get out. This is never the case, according to Brewer. You are a volunteer in a clinical trial and at any point can decide the trial is not right for you and cease treatment.
Clinical trials can be a great resource for people diagnosed with rare cancers such as mesothelioma, because it gives them access to experimental treatments that otherwise are not widely available.
Immunotherapy clinical trials are also cost-saving for many patients, as the drugs themselves — which can cost tens of thousands — are often covered by the sponsor.
Resiliency on Display at Patient Summit
Aside from the informative lectures from experts, the thing that stood out the most from the Tampa summit was the resiliency of the patients in attendance.
They were there not because they had nothing better to do with their Saturday, but because they saw the summit as another opportunity to learn and explore other treatments for their cancer.
“Get knowledgeable and be your own advocate,” said Karen Koehler, a chronic lymphocytic leukemia survivor who credits immunotherapy for saving her life and getting her back on the golf course.
I sat at a table with two colon cancer patients, one at stage 3 and the other stage 4. They shared more than a diagnosis — they shared a thirst for life and a determination to live.
“Life is fun,” one of them eloquently put.
At lunch, I met a melanoma survivor who has embraced alternative therapies, and I chatted with another attendee about treatments available in Colombia and Panama.
Everyone at the summit had a different story and varying diagnoses, but a similar goal: To exhaust every resource available to extend survival.
The summit provided that opportunity to many of the survivors in attendance, connecting them with patient navigators to find eligible clinical trials.
Koehler and other survivors shared their immunotherapy journey to inspire and motivate other patients.
“For us, with the trial, there was no fear at all,” Koehler said. “We just knew it made so much sense to use your own body to help itself.”