thank you for all that info. Very encouraging. May I ask which cancer center you were at or your dr's name? My husband is being treated for stage 4 at Dana Farber in Boston. (diagnosed 3 mos ago at age 59). He has had 4 Folfirinox treatments. Dr said because he was healthy and "younger", he'd put him on Folfirinox, which he described as the "most aggressive" chemo. My husband has tolerated it well, and will be going for the 5th treatment next week. I don't like to get "too far ahead of ourselves," as we all live from "Scan to Scan". His first scan after chemo (last week) was mixed- a little shrinkage of tumor, and one lymph node shrunk and almost gone, but other lymph nodes showed some increase. But dr seem pleased with progress, and called him "exceptional case" because he does not have many side effects, and he continues to works from home 5 days a week, eats well, and we try and walk every day, at least a mile, sometimes more. He does get tired in the evenings and has that cold sensitivity issue, but other than that, he feels pretty good. His CA 19 has come down with every treatment, but still high. We totally changed our diet--no alcohol, no soda, very limited sugar, no red meat, lots of fruits/veggies/fiber, limiting dairy. So, I am thinking if my husband is doing well so far, maybe he is a candidate for the extended chemo, if and when the time comes... so I am interested in knowing whether Dana Farber was involved with your care. I will ask my dr. at next visit about this. At last visit, he said to continue w the chemo, but he didn't say for how long.
My primary oncologist for the aggressive Folfirinox treatments was Dr. Manish Shah who is the head of solid tumor oncology at Weill Cornell Medicine in NYC. Occasionally I was also seen by Dr. Allyson Ocean who is a pancreatic cancer specialist. Both also are principal investigators of clinical trials. I participated in a clinical trial at the Abramson Cancer Center of PennMedicine in Philadelphia. If a genetic mutation is driving the cancer, I would recommend Dr. Kim Reiss-Binder.
Sounds encouraging that your husband is tolerating Folfirinox well. It is considered the “gold standard” of treatment for pancreatic cancer. If he continues doing so well, he might want to advocate to go beyond the 12 cycles to address minimal residual disease that often remains after one is declared NED. Doing the extra chemo likely contributed to to my successful outcome.