I had my final diagnosis on a Friday afternoon, signed the documents and then found out the surgeon wanted to do the Whipple the next morning- a Saturday. The reason that there was no time to do adjuvant chemo is that the CT and EUS showed the tumor was extremely close to the portal vein and with the tumor deemed extremely aggressive-there was a very small window of opportunity before the tumor would have encased the portal vein resulting the staging becoming locally advanced, un-resectable. On my request, I asked for the surgery to be scheduled two days later on a Monday morning so a family member could arrive to serve as my caregiver.
At the start of surgery, it was noted the tumor was already abutting the portal vein. The surgical team of three had two that did liver transplantation as well and had vascular surgery skills. A consult with the pathologist is attendance concurred to continue the Whipple with portal vein resection. Surgical pathology of the section of portal vein removed revealed the tumor had already penetrated it, and a week later, a CT revealed metastatic disease in the liver. It grew enough in the two week time frame when the first diagnostic CT was done where the micrometastatic disease was below the detection limit until first became detectable. Had it been seen upon the initial diagnostic scan, the Whipple would not have occurred and death likely would have resulted from ensuing esophogeal varices that would have developed and caused a massive hemorrhage and hypovolemic shock. Thankfully I did not insist on having a PET scan. Had it detected metastatic spread, there would not have been the Whipple procedure and not as good an outcome would have been the result- likely mortality within 6-8 months.
Surgical recuperation required 8 weeks because of the added vascular resection. Chemo could not start until 8 weeks and that meant having metastatic disease growing uncontrolled. What were small areas of disease throughoutbthe liver turned into six sizable tumors with many smaller areas too numerous to count. It took extremely aggressive chemotherapy of the original higher concentration of Folfirinox in use between 2011-2018 to be effective. Fortuitous was 55 and in excellent shape from a healthy lifestyle since my teenage years and long distance endurance cycling. This allowed me to endure 46 cycles of chemo administered every 15 days in groups of six cycles that alternated between Folfirinox and resting cycles of 5-FU/Leucovorin. It was dosed this way because of having to go well beyond standard of care treatment of 12 cycles and the concern for permanent damage as a result of chemo induced peripheral neuropathy . Cold therapy to protect peripheral nerves from oxaliplatin was not known in 2012 when I began chemotherapy.
So in retrospect, had there been no issue of involving vasculature, the preferential method of treatment would have been neoadjuvant therapy to address the high potential for micrometastatic disease which is a hallmark of pancreatic cancer occurring earlier than other types of cancer. This likely would have shortened the duration of standard of care chemo, although I still would have lobbied for going beyond 12 cycles as that is an arbitrary number that was selected by oncologists. It is no guarantee it will eliminate minimal residual disease that is the cause of recurrence in 80% of patients within 24 months of having the Whipple or distal pancreatectomy with splenectomy. Oncologists that have followed my case over the past 12.5 years credit the inordinate amounting Folfirinox I received as being a key component resulting in being determined cured.
That's great to hear you were able to overcome stage 4. In retrospect, would you have been better or worse off with neoadjuvant ? Or is it hard to say one way or the other?
Did you receive any vaccine trials by any chance?