The Whipple procedure since 1935 was considered the only method of cure and that was if one had a very early stage. There are some stage IV survivors that were cured using chemo drugs designed for colon cancer. They are around but not many of them. The original version of Folfirinox was FDA approved for pancreatic cancer in 2011. The modified version was FDA approved in 2018. There is now sufficient data since the original version of Folfirinox began being used in clinical trials prior to 2011 of long-term survivors who were stage III and stage IV.

5-Fluorouricil (5-FU) is a component of Folfirinox. It was developed to treat colon cancer and then was found to have benefit in pancreatic cancer. As I mentioned previously, I got Folfirinox for six cycles and then the irinotecan and oxaliplatin were removed so I was just getting the 5-FU component with Leucovorin as resting cycles to reduce the chance of permanent neuropathy. My tumors continued to respond significantly to the 5-FU alone.

The best experienced medical centers for treating pancreatic cancer are the ones that are NCI designated centers of excellence in cancer treatment with a Hepatobiliary department or even better, one with a pancreas program. I went into NYC and chose Weill Cornell. The Hepatobiliary program was headed by a world renowned surgeon who at that point in his career had done over 1500 Whipples and was part of a group of three that pioneered a liver transplantation technique. He was a very skilled surgeon with vascular surgery skills that was at the right place and the right time when portal vein involvement was discovered while in surgery.

During standard of care treatment with Folfirinox I had genetic testing done. It was not standard practice in 2012 to do on pancreatic cancer patients then. It found a BRCA mutation and the geneticist suggested I search for a PARP-1 inhibitor trial. It took 14 months and I happened to find it before it was publicly announced. That’s an interesting story for another time. I was the first patient in the USA to enroll in the trial and the longest pancreatic cancer patient in the world on that drug. The trial was at Abramson Cancer Center of the University of Pennsylvania. I continue to go there for long-term following being on that experimental drug.

Regarding multiple opinons-absolutely. Contact the Pancreatic Cancer Action Network at 877.272.6226, M-F, 7:00am-5:00pm PT. They can provide a list of skilled surgeons and facilities by State and region. Most surgeons would not have continued the Whipple when vascular involvement was found. Two of the three surgeons on the surgical team were also transplant specialists with vascular surgery skills in addition to doing the Whipple. So they were equipped to handle the challenges. Surgeons skills vary and why you Ned to find one with the expertise that can do the surgery.

Definitely seems to be a familial pattern. Not all cancer genes have yet been characterized. Did you see a genetics counselor? I am not sure if there is a research institution doing research on cancer genetics that is working on this issue but it just has got to be out there somewhere. My daughter is at risk for BRCA, finally agreed to genetic testing. It will be done as a virtual visit at MSKCC. This is standard screening.