Metal. The surgeon suspected malignancy so wanted a more permanent stent …..

While the chemo protocols using same chemo drugs at different institutions may be true, the knowledge and skill sets of the treating oncologist differed. While all pancreatic cancer oncology specialists are GI Cancer oncologists, the reverse goes not always apply. Very few GI cancer oncologists have the sub-specialty in treating cancers of the pancreas.

Pancreatic cancer is not only a rare cancer with approximately 62,000 cases diagnosed in 2022, but it is a challenging cancer to treat. In the NCI designated excellence in cancer treatment medical centers with a pancreas program is where you will find pancreatic cancer oncologists with the higher level of knowledge and experience. In my going on 11 years as a survivor of stage IV disease, I have mentored many patients and my recommendation was in being treated in a high volume center treating pancreas patients. I encountered two individuals who chose to be treated at either a small regional medical center or a local infusion clinic. Both has severe reactions that resulted in going into ICU from severe reactions. It wasn’t a single reaction each had but had reactions with each treatment. It was later learned that neither treating oncologist had treated a pancreatic cancer patient or had no experience in using Folfirinox or in adjusting the concentration or had knowledge of using metronomic dosing.

When I did my treatments over the course of two years, I had two nearby medical centers each within three miles of my home as well as an infusion clinic. I chose going to the tertiary medical center where I had my Whipple surgery as well as going there for all surveillance scans. There was familiarity with my case and consistency in imaging instrumentation and the radiologists interpreting the scans. The appointments required a round trip by train/subway of 4’20” minutes and I managed although challenging at times. The medical center had pancreatic cancer oncologists and a pancreas program. They were on top of the treatments.

And the oncologists were able to think outside the box. I advocated for more aggressive treatment because my goal was more than achieving NED….it was curative although that was thought highly unlikely. Because of concern of neuropathy with getting in excess of 12 cycles, my oncologist decided to do six cycles of Folfirinox followed by six cycles of 5-FU/Leucovorin. This alternate dosing schedule was used over the course of 24 months and in the end I had received 24 cycles of Folfirinox and 22 cycles of 5-FU/Leucovorin for a total of 46 cycles. Although I did experience neuropathy, it was far less than what the average patient seems to experience and likely the result of a more experienced oncologist with the expertise in treating pancreatic cancer patients. The neuropathy in the fingers and cold sensitivity in the hands cleared first and completely. The feet cleared as well but took significantly longer. I know of other long-term survivors such as myself who were not treated using alternate cycles and likely have permanent neuropathy.

While it may be inconvenient to travel to a high volume center, the benefits for me far outweighed the inconveniences. I not only survived almost 11 years now, but I have a very good quality of live and in 2022 was declared cured. A long wait since being declared NED in 2016 to hear the word “cured”.