Coming from a background in cancer, immunology and cancer stem cell research, a ten year survivor of stage IV pancreatic cancer and serving as a mentor to many pancreatic cancer patients, I’ve been asked a number of times why 12 cycles is the “magic” number.

As a researcher, I expected there was either an animal or human study done. After an extensive search, I asked three of the most experienced oncologists that played a role in the Folfirinox being FDA approved or the clinical studies showing superiority over other treatments. The three oncologists with the most experience with Folfirinox are William Isacoff (now retired from UCLA), Daniel VonHoff (retired from Honor Health in Phoenix) and Thierry Conroy in Nancy, France who is still an active clinician. No one could give me a clear answer and it seemed to be based on an “average” patient being able to handle that much without significant peripheral neuropathy and provide therapeutic value in treating systemic disease.

As a researcher with an understanding of cancer biology and the concepts of NED and MRD, my goal was in surviving the disease first. With stage IV disease and the desire to survive-buying extra time was not an option. It was do or die so I did. And not only did I do 12 cycles of the original formulation that is 20% higher than today’s (m)Folfirinox, I did 24 cycles over a two year period interspersed with 5-FU+Leucovorin as resting cycles. It was done in groups of six. Oncologists like to have their patients try to make it to eight cycles as it is felt more benefit is gained if that point can be reached. For patients having a hard time dealing with standard treatment, there is a method known as metronomic dosing. It has been around for more than 20 years and Dr. William Isacoff is a proponent. It can be hard to find oncologists who use the technique but they are around. With metronomic dosing, small amounts of the chemo are used but given more frequently. While still toxic to malignant cells, the effects on healthy cells are minimized. Here are some links with more detail of the technique-

Metronomic Dosing

LetsWinPC.org ran a feature story about metronomic dosing a few years ago and a search will provide the link. The National Library of Medicine at the NIH is the source of two studies on the technique. Because I am posting for the first time, the site will not permit me to provide the links.

Chemo can be grueling but I was determined to have some good come out of a bad situation. I had to toughen myself emotionally, mentally and physically to get through it. I refused to let the cancer define me and I went about my daily life as normal as possible.

I had an excellent response to the treatment and during that time I was genetically tested leading to uncovering a mutation that was driving my cancer. After completing the “gold standard” chemo, I entered the clinical trial. Years later members of my care team shared something they dared not say when I was under treatment nor did I ask or want to know-how long did they expect me to survive at the point I started chemo. I was told not more than one year. Ten years later I give some of the credit to sticking it out on Folfirinox to reduce the tumor burden and then using the clinical trial drug as long-term maintenance therapy that I have been taking for the last 7 years and 8 months. I have been N.E.D. since April 2016.