The foliage in my back yard is different this summer. I sit here and wonder what’s changed and then realize that the leaves on the trees are greener, really greener, than I have ever recalled. I feel surrounded by a lushness that’s almost startling.
And I begin to think that somehow nature’s intensity is reflecting my experience these past two years of living with stage 4 pancreatic cancer.
This summer is my third summer living with this cancer. Nothing is the same anymore. And I realize as well, that my approach to treatment for pancreatic cancer also reflects this unusual intensity of nature I see around me.
I am receiving treatment that goes beyond standard of care. My doctors and I are committed to using new investigational research in my treatments, like synthetic Vitamin D and circulating tumor cell analysis. This innovative science driven approach of my oncologists, William Isacoff and Allyson Ocean has provided me with precision treatment shaped specifically to my cancer.
As many pancreatic cancer patients know, standard of care does not work in the long run and these treatments can be withering and depleting. This does not have to be the case. I have been writing about my treatment in the Huffington Post to share new options with other patients and provide information on scientists who are leaders in pancreatic cancer research.
Because of the positive response to these blogs, two months ago we created a new resource for patients, called Let’s Win. This is the first online community and crowd sourcing platform that educates pancreatic cancer patients about new treatments and new science that can extend our lives.
Joining me as co-founders of Let’s Win are Kerri Kaplan, president of the Lustgarten Foundation the nation’s largest private funder of pancreatic cancer research, Dr. Allyson Ocean, New York Presbyterian Weil Cornell, Willa Shalit, a leading communications expert and Cindy Gavin our founding executive director. We are all committed to confronting conventional attitudes about care, by empowering patients and families with information that can make a difference in their lives. Here we all are.
Thousands of pancreatic cancer patients may not have this information about new science driven treatments and many general oncologists do not have expertise in treating pancreatic cancer. Thus, many patients may be only on standard treatment with poor outcomes. Let’s Win is working to change that.
As Dr. Isacoff recently noted in an interview for Let’s Win, “Patients are typically not given many options. Usually doctors open the “book” and follow the guidelines. If a patient is what is called a “good performance status patient, the patient gets three drugs. If the patient is not considered a good performance patient, she gets two drugs. Three drugs are probably going to be better than two drugs, but no one is talking 5 years or even 2 years. With these protocols, the 2-year survival is under 10%. “
Let’s Win’s Science Advisory Board chaired by Dr. Ocean is comprised of the most preeminent researchers and clinicians focused on pancreatic cancer. All science articles and treatment submissions by patients are reviewed by members of the science advisory board so that patients or doctors can be assured of the accuracy.
Let’s Win focuses on three areas:
My treatment – which includes submissions from pancreatic cancer patients describing their treatments that comprise elements beyond straight standard care. These descriptions have information about doctors, hospitals, protocols so other patients and families can have specific ways to follow up on these treatments if they are interested. An example of a My Treatment story is here.
Promising Science – which details the latest research directed to pancreatic cancer enabling patients and families to know which scientists are working in different areas that may be useful for them. Patients can inform their doctors about different investigational approaches and determine if they want to use them.
For example, my doctors utilize the investigation research of Mark Ricigliano who analyzes the sensitivity of my tumor to different chemo therapies based on his circulating tumor cell analysis. His tests may determine what specific chemo can be better for me and whether I may be becoming resistant to a chemo.
Clinical Trials – which describes current clinical trials that may be of interest to patients. Let’s Win describes the trials in easy to understand language so patients and families can have the relevant information to share with their doctors.
Let’s Win also has a comment section so that patients and families can communicate with each other about these treatments and new science. This is essential. The more we talk with each other , the more informed we are , the more we can ask our doctors for care that can be personalized to us .
Our entire approach is directed to empowering patients and families with information they can use that may extend our lives. By empowering each other, my hope is that we can begin to breakdown the resignation and resistance to try new treatments that permeates the approach to pancreatic cancer.