Coming from a career in clinical research that included cancer, I too assumed 12 cycles was based on clinical trials. I tracked down three of the pioneers in doing the trials for Folfirinox, (m)Folfirinox, Gemzar and GemzarAbraxane which is how I learned of this.

Folfirinox is very toxic. Each of its components can cause tissue and organ damage that can be very debilitating. No oncologist wants to put their patients in that situation and studies have shown no significant benefit doing a few extra cycles.

In those that did benefit, we were younger (under age 60), very physically fit (running or endurance cycling or other strenuous physical exercise), no other co-morbidities, and we all advocated for going beyond 12 cycles. In my case, I was familiar with what physical damage could occur from toxicity but was willing to accept the risk. I was prepared to adjust to a new normal by adapting to the limitations that could arise.

I was monitored very closely. I received calls from care team members in the days following infusion. If sequela had developed that was detrimental, treatment would have been assessed. Fortunately I tolerated treatment extremely well and used pre and post medications to prevent/control symptoms. I did daily moderate exercise and never missed a day of work in 24 months of treatment. My immune system likely played an important role in getting the disease under control. It is thought my tumors produced many neoantigens making them more recognizable to dendritic and macrophage cells. All of this were likely contributing factors that led to becoming an exceptional responder.

My advice to someone that is strong physically, emotionally and mentally is self-advocacy. This is the time to learn about the possible long term temporary and permanent side effects and make a decision if willing to accept the potential consequences as I did. If one’s oncologist says no, go for additional consults at NCI centers of excellence and Comprehensive Cancer Centers with high-volume pancreas programs.