Connecting The Dots In The Fight Against Pancreatic Cancer

Part of my job as a doctor and pancreatic cancer specialist is to diagnose, examine and treat patients. When dealing with the third leading cause of cancer death, where there is no test for early detection and it’s often not diagnosed until it has reached stage IV, my job is even more difficult. I have to tell patients and their families this news that is going to turn their world upside down, and then talk through the next potential steps in their treatment plan. As a physician, I’m always balancing the personal emotions with the clinical plan of attack. You see the raw emotion, the shock on your patient’s face and it’s heartbreaking. We work through that so we can start working on a treatment plan.

Earlier this year, I helped co-found the crowdsourcing community, Let’s Win. All of our co-founders have a deep connection to pancreatic cancer, and we understand the importance, the urgency, and the need to change the status quo. Let’s Win is an unprecedented platform that enables doctors, researchers and patients to share fast-breaking clinical information on potentially life-saving pancreatic cancer treatments and trials that go beyond the standard of care.

Anne Glauber is one of our co-founders. Anne is also my patient. With so little information about pancreatic cancer available online, she was spurred into action into creating Let’s Win. Today she seeks to help others facing the same fight by providing patients and families with resources to empower themselves and their treatment.

I would describe Anne’s treatment course as a two-and-a-half- year science experiment. All of her therapies have been developed through science in the form of her organoid developed at Cold Spring Harbor Laboratory, metronomic dosing of chemotherapy, which is now part of a clinical trial sponsored by Celgene, the use of synthetic vitamin D, interrogation of the tumor cells circulating in the bloodstream — and the use of disulfiram or Antabuse, the pill given to alcoholics to deter them from drinking alcohol. When I prescribed this to Anne, we both joked and agreed that drinking wine is overrated! This drug specifically blocks an enzyme in Anne’s cancer that encourages the growth of cancer stem cells, with the goal of inhibiting the pancreatic cancer. This is exactly what we need to do as part of Anne’s treatment course.

With Anne on a good treatment plan, we’ve focused our efforts on Let’s Win. We’ve assembled a national Scientific Advisory Board (SAB) that is essentially the Who’s Who for Pancreatic Cancer. All of these researchers, both clinicians and scientists, are on the front-lines of this disease. Their innovative research projects are supported by our partners at the Lustgarten Foundation. They are members of the Cancer Moonshot initiative. We are working together with our SAB to foster collaboration among doctors at their own institutions; they are helping us reach institutions, hospitals, and clinics throughout the U.S. to spread the word about Let’s Win.

Pancreatic cancer patients don’t have time to waste, and it can take a long time for new science to go from the lab to the clinic. The scientists doing the research want to connect with patients, but don’t always know how. Doctors want to help their patients, but many don’t know about the latest advances.

We will connect these dots, digesting research and identifying advances, making both the information and the process easier to understand for patients AND for oncologists. We will be an important resource for oncologists who do not specialize in pancreatic cancer. Physicians who do not see many pancreatic cancer patients (the case with most general oncologists) may not be up to date about important advances or may be risk averse. They are more comfortable prescribing only standard of care; it’s covered by insurance; it’s part of the guidelines, and they are concerned about experimenting with other options that are not formally FDA approved or still in investigation. Yet, pancreatic cancer patients everywhere want to take risks and need their oncologists to take risks! Alternative options do exist; the vital role of genomic testing, for example, how genetic mutations might be driving a person’s cancer; or how targeted therapies may affect that patient’s tumor growth or have the potential to improve his or her outcome. Our goal is for Let’s Win to make it easy for all of the stakeholders to help each other.

This is a great moment in time — a good kind of “perfect storm” — empowered patients and families, committed researchers and doctors, social media serving as an engine and big data poised to assess information even more quickly. We are grateful for your support. Let’s Win Together!