What do you do with the news that you have pancreatic cancer and likely have 6-12 months to live? Coping mechanisms may vary. Something inside me knew what we were dealing with since the MRI was performed on May 8th. I can’t explain it, but the news hit as more validation than breaking. I wasn’t shocked, rather more overwhelmed with planning and operationalizing a response and mobilizing that response as fast as possible. The latter task proving to be the most difficult amidst COVID-19.
So now that we know what we are working with, I went home hugged my three girls (Olivia, Colette, and Cecile) and we got to work building out our team of support. Like most Americans, Olivia and I are pretty terrible at asking for help, but that first night we acknowledged that we were going to have to learn to take help from others. We cannot do this alone.
My work at Memphis Medical District Collaborative (MMDC) over the past five years has connected me to the medical superheroes of Memphis. We started our orientation there. Our goal was to understand and learn from trusted experts what we could about this disease, how we navigate the American health care system, and the nuances of different care options. This was the first of many times during this journey that we were humbled by our privilege and the graciousness and love that people want to share. We do not deserve the luxury of access to the best and the brightest from around the globe to help us understand the fundamentals of our cancer care, but here we find our selves blessed with it. Perhaps a timeline might be useful:
May 20th (Day 1 post diagnosis) - I emailed two friends and colleagues at ALSAC/ St.Jude. Within 20 minutes I was on the phone with them. They were supportive, sympathetic, and comforting. Most importantly they knew what to do. They were just what I needed at that time. They immediately connected me with a St. Jude doctor who is an internationally acclaimed associate and the nation’s leading doctor of pediatric brain cancer. This doctor immediately takes me under his wing, explains the system and connects me to the team that he thinks is the best for my needs - the team at Vanderbilt-Ingram Cancer Center. I was on the phone with Vanderbilt for initial intake within 24 hours.
May 23rd - Another friend and colleague in Philadelphia knows the president of the Johns Hopkins system and he expedited my medical files to their pancreatic cancer center and set up an initial consult call for 7am on May 24th. That was a Sunday!
May 27th - Scheduled initial appointments with Vanderbilt-Ingram Cancer Center
May 28th - Re-connected with a friend from my youth - Chris Wark. He has a wild story of how he radically was cured from stage III cancer through a holistic approach - supporting his body with diet, stress, and lifestyle changes. Chris provided me access to the tools that he uses. You can check them out at chrisbeatcancer.com
May 31st - My sister connected me to Dr. Park, the pancreatic cancer specialist at Memorial Sloan Kettering and we had our initial phone consultation with in 24 hours of me sending him my files.
So what does all this mean? Here are a few short learnings from these early activities and conversations.
The best chances of extending the life (quantity and quality) is to work with a high volume pancreatic cancer center around the US. The ones that rise to the top are M.D. Anderson (Houston), Memorial Sloan Kettering (NYC), Vanderbilt-Ingram Cancer Center (Nashville), and Johns Hopkins (Baltimore). They stressed that it was not in my interest to mess around with non- pancreatic cancer specialists. It was in my best interest to get to a nationally known cancer center immediately.
Pancreatic cancer is trickier than other cancers because it is fairly aggressive and typically does not reveal itself with symptoms until it is has progressed fairly far. My tumor is small (3.5-cm) and is located in the tail of the pancreas, wrapped by my spleen and several small 1-cm lesions in my liver, meaning that the cancer had metastasized to my liver, giving me an official diagnosis of Stage IV pancreatic cancer.
The leading surgeons that reviewed our files unanimously said that because my cancer had spread to my liver, I needed to first work with an oncologist to shrink the cancer cells in the liver and other areas before surgery would be useful. While this was not the surgical opinion we were hoping for, it is a clear guidance endorsed by four of the top pancreatic surgeons and their oncologist partners.
So, with this knowledge we set out to build a team that we are comfortable with and that is comfortable with us including more integrative therapies (diet, acupuncture, exercise, and supplements) to the extent feasible with modern western approaches. This is how our team came together:
Lead Position: Dr. Dana Cardin at Vanderbilt-Ingram Cancer Center. Dr. Cardin leads the Pancreatic Cancer Oncologist team at Vanderbilt and leads the Phase 3 First Line Clinical Trial that combines Folfirinox with a new study drug that targets the mitochondria of the cancer cells. This study is generally thought to be the most promising treatment option for pancreatic cancer in years. We focused all of our energy into getting into the testing arm of this study. On 6/22/20 I found out I was selected to the study and randomized to be in the testing arm. With treatments starting 6/24/20 This is great news!
Consulting Pancreatic Oncologists: (1) Dr. Dung Thi Le at Johns Hopkins specializes in pancreatic oncology and has a couple of promising second line clinical trials that we could consider once the study at Vanderbilt is complete. (2) Dr. Wungki Park is the pancreatic oncologist at Memorial Sloan Kettering. He is specifically interested in how the DNA treatment options come back. If the germ-line testing comes back and this is a genetically induced cancer then there are a lot of new genetic treatment options that he can provide. The genetics testing should be back by 7/3.
Integrated Care Team: It doesn’t take long to realize there is a tension between conventional western medicine and science and the less conventional eastern approaches to curing cancer that focus on radical changes to your diet, exercise, lifestyle, supplements, etc. to help cure cancer.
There are a ton of beautiful and compelling anecdotes of people curing “terminal” cancers these ways. Lots of books, webinars, videos, and classes about these approaches are available. They are inspiring and some of the ideas make a lot of sense. The challenge is that there is little scientific reviewed data backing this up. There are many theories for why the research is lacking, but most of it comes back to a lack of funding without Big Pharma at the table.
Olivia and I think there is a lot of value in combining these approaches, provided you don’t introduce anything that might impact the chemo or other conventional treatments. To this extent, we will be working with a coach to coordinate with our team at Vanderbilt to ensure that my plan is aligned and complementary to Vanderbilt’s treatment plans.
Over the last month we have read, researched, and are beginning to understand the nuances of my cancer. We have assembled an outstanding national medical team of high frequency pancreatic cancer specialists. And as of June 24, I started treatment at Vanderbilt under one of the most promising clinical trials to come out on pancreatic cancer in years.
Throw in COVID-19, no daycare for children and full-time jobs, and I’m pretty pleased with how far we have come in relatively short order.
I’ll write a dispatch on the clinical trial later, but for now it’s worth understanding what my treatment schedule will look like for the next six months. During this time I will have several 14-day treatment cycles.
The schedule - each treatment cycle will look like this:
· Day 1 - All day infusion at Vanderbilt [In Nashville]
· Day 2 - Portable pump Infusion for 36 hours [In Memphis]
· Day 3 - Partial day of infusion and Labs at Vanderbilt [In Nashville]
· Days 4 - 14 - Recovering in Memphis.
· Rinse and repeat.
All in, it should not be too disruptive for the kids, and the travel is really only two days and two nights away from home every two weeks.
I wanted to post a little more detail in these early dispatches to set the context. Other dispatches will be shorter updates on how we are feeling, observations about our medical system, thoughts and musings as we navigate the giant cosmic tap on the shoulder and what that all means. Please feel free to ask questions or provide comments. We are making this up as we go, so we are ready to learn from your stories too.