It sounds like your husband is receiving (m)Folfirinox based on the dosing schedule of starting a new cycle every 15th day over the course of 6 months. This is a standard of care protocol. Additional treatment using radiation with an oral chemo pill such as capecitabine (Xeloda) is to give added insurance of addressing minimal residual disease.

Many people do not have a full understanding of the term NED which stands for No Evidence of Disease. It is used to signify that using conventional imaging-e.g., CT, MRI or PET, if there is disease remaining known as minimal residual disease (MRD), it is too small an amount to be detected by the sensitivity of the instrumentation. So it is possible that micrometastatic disease is still present and the hope of the oncologist is the patient’s immune system is robust enough to contain it. If the immune system is challenged and weakens, progression of malignancy can result.

I and others were curious on why 12 cycles was chosen for standard of care to try and achieve NED. Coming from the field of cancer and immunology research, I searched for scientific papers to see if there were studies done. When I could not find any, I contacted the lead authors of papers dealing with the clinical trials and studies using Folfirinox. What I learned is 12 is an arbitrary number chosen by a working committee of oncologists who felt it would provide the goal of NED with tolerable side effects, namely peripheral neuropathy.

When I was diagnosed with stage IV disease in 2012, the question I asked myself was what was the purpose in my doing chemotherapy? Was it to buy some time, long-term survival or perhaps a cure? I took the decision I did not want palliative treatment…I wanted to attempt curative despite being stage IV. This began my self-advocacy to convince my team I was strong enough physically, mentally and emotionally to handle aggressive Folfirinox. Instead of 12 cycles, I did 24 and after every six, I had resting cycles of just 5-FU with Leucovorin to let my body recover, lessen the side effects of peripheral neuropathy while at least keeping the tumors stable, if not continuing to shrink on the reduced regimen.

The aggressive chemo beyond SoC likely destroyed any MRD. While I was on SoC, I was genetically tested and found to have a targeted gene mutation. So after getting as much benefit from Folfirinox, I went on maintenance monotherapy with an oral drug which works differently than chemo. In June I will celebrate 11 years survival and have been told by a number of oncologists following my case that I am considered cured from the aggressive chemo regimen I had.