Reeducating Myself About Pancreatic Cancer
- Nausea and jaundice lead to a pancreatic cancer diagnosis
- Pancreatitis post diagnosis
- Chemo, a Whipple procedure, and more chemo
On Sunday afternoon, January 10, 2021, I took down the outside Christmas decorations.
It was extremely cold that day so when I came in from working in the yard, I had a bowl of pea soup to warm up. The pea soup didn’t taste so good, but I thought nothing further of it until Monday, when I had some stomach pain. I attributed the pain to the soup, since it did not taste quite right. But I continued to have minor pain over the next two days, and I continued to blame on the pea soup.
Since we were in the middle of the pandemic, I was working from home. On Thursday, January 14th, I had lunch with my wife, who noticed that I was a bit jaundiced. I immediately called my primary care physician, Dr. Shelagh Fraser, who took me right away. After running a few blood tests in the office, she indicated that we needed to do an abdominal CT scan. It took a number of phone calls to get the abdominal scan scheduled, given that most emergency rooms in the greater Indianapolis area (where I live) were full of COVID patients. But fortunately we were able to find a local hospital that could do a scan that afternoon.
The CT scan showed the presence of a tumor in the head of my pancreas. I knew what this meant, as I was a long-time researcher at Eli Lilly. In fact, I had worked on the clinical development of Gemzar when I was the director of clinical research for Eli Lilly, Japan.
Fortunately, I was diagnosed very quickly from the time symptoms began. An ERCP was scheduled for the following Monday, which confirmed that the tumor was cancerous. The ERCP procedure caused pancreatitis, and I was admitted to the hospital the next day, at the height of the COVID pandemic. No visitors were allowed in the hospital so I utilized the time to learn as much as I could about pancreatic cancer and the organizations that support patients with this diagnosis. It was during this period of time that I began to search for treatment options and physicians. As I explored the major cancer centers, Dr. Fraser was incredibly helpful as I reviewed my options.
Putting a Treatment Plan in Place
I decided on treatment at Indiana University’s Schwarz Cancer Center right at home in Carmel. My treatment team of Dr. Michael House, my surgeon, and Dr. Anita Turk, my oncologist, were the first to give me any hope. It was agreed that we would begin neoadjuvant therapy, which would be followed by a Whipple procedure, which would then be followed by additional chemotherapy. Several days later, I had a chemotherapy port implanted at Indiana University Health North Hospital.
My chemotherapy was the modified FOLFIRINOX regimen consisting of irinotecan, oxaliplatin, and fluorouracil. I received the infusions of irinotecan and oxaliplatin at the infusion center following pretreatment with steroids and anti-nausea drugs, such as ondansetron. I then went home with a fluorouracil pump, which I wore for the next three days. I would return to the infusion center on the third day where they would disconnect the pump and flush the port.
Since I was trained in pharmacology, I knew the mechanism of action of these chemotherapy agents, as well as their side effect profile. I can report to you that all of the side effects that are listed in the textbooks do in fact occur in clinical practice. I experienced nausea, vomiting, diarrhea, neuropathies, abdominal pain, and severe fatigue. The one side effect that I experienced that I had not previously read about was first bite syndrome, quite an interesting side effect. As the name suggests, when you take the first bite of some food you end up with a tremendous zinging feeling in your salivary glands. But despite all of this, I was able to work out in the weeks between chemotherapy, which hopefully increased the number of my circulating T cells.
My chemotherapy regimen was repeated six times prior to the Whipple procedure. Fortunately, my levels of CA 19-9 decreased in response to the chemotherapy.
Time for Surgery
I had the Whipple procedure on May 11, 2021, performed by Dr. House, at Simon Cancer Center, University Hospital in downtown Indianapolis. I was hospitalized for four days following the procedure and then went home to continue to recuperate. Fortunately, my levels of CA 19-9 decreased even further following the Whipple procedure.
One month after the surgery I begin chemotherapy for another six rounds of the modified FOLFIRINOX regimen.
Since completing chemotherapy at the end of December 2021, I have been in an active surveillance program where I return to the Schwarz Cancer Center for bloodwork, including my CA 19-9 primary biomarker, and CT scans of my abdominal region as well as my lungs.
Keeping Up With the Science
I learned about the importance of genetic mutations and molecular profiling, so I had my tumor tested as well as undergoing germline testing for mutations. I have many of the common germline mutations for pancreatic cancer, such as KRAS G12D, TP53, KDM6A, CDK2A/B, and AKT2. Unfortunately, at this time, none of these mutations are currently druggable. I continue to read the scientific literature to see if any drugs are currently progressing through clinical trials that may be appropriate for these mutations.
I discovered Let’s Win shortly after my diagnosis and have been religiously reading the updates since then because the information is very helpful and encouraging.
I have many people to thank who helped me through treatment. I met other patients with pancreatic cancer and their guidance was invaluable. Nancy told me what type of shirt to wear to chemotherapy, to wear special socks, to take my Creon, and that a person could tolerate over 100 rounds of 5-FU. Don helped prepare me for the 5-FU infusion, helped me understand the cadence of life during chemo, and the importance of exercise. Everyone at the cancer center provided so much clinical care and kindness—the doctors, PAs, and especially the nurses at the cancer center; and everyone else from the greeters, lab and radiology techs, and office staff. And a special thanks to Dr. House and Dr. Turk, who did a great job and were very patient with all my questions.