I was diagnosed in 2012 stage III locally advanced, borderline resectable. In the OR it was found that the tumor was in contact with the portal vein requiring resection. Pathology found the tumor invaded the vascular wall. A week after surgery a CT was done and the radiologist noted suspicious areas in the liver. It was most likely that I was already stage IV when the Whipple was performed. In 2012 the resolution of a CT was not as good as today and it can’t detect micro-metastatic disease (micro-satellite clusters) or anything less than about 4-5mm back then. Today the resolution is 1.3mm.The conduit of spread was likely via invasion of the tumor into the portal vein which goes to the liver.

The first chemo of Gemzar was not effective and then I was switched to an aggressive regimen of Folfirinox. It was the original formulation 20% higher than today. I did 24 cycles and 22 resting cycles of 5-FU in alternating groups of six. Just after the first six cycles a CT revealed significant shrinkage and that finding led to molecular testing by liquid biopsy. It identified a germline mutation leading to a search for a targeted therapy clinical trial. After completing SoC chemo, I enrolled in the trial resulting in a complete response and achieving NED in 2016.

I always ate healthy since high school. Low fat, non-fat and no added white refined sugar since I was 10 as well as no high fructose corn syrup. I was ahead of the curve on those items when in 1966 I learned what diabetes was doing to my beloved Grandfather.

All through chemo I went to work and exercised. I managed to do some strenuous yard work and eventually got back to doing a few 50 mile bike rides as I was doing frequently up to 10 days before my surgery. I also did daily walking and in inclement weather used an stationary bike.

I rarely drank before surgery and same after. Maybe one or two glasses of wine a month only when out to restaurants. At parties I usually stick to Club soda or ice tea. Surgeon said no problem with alcohol in moderation. However I take a PARP inhibitor as long-term maintenance monotherapy which causes anemia, raises creatinine levels in the bloodstream and that gives a false impression of kidney disease. When I pause the maintenance therapy, the anemia improves, the creatinine gets back to high end of normal and kidney function as measured by EGFR returns to normal.

So for maintaining my health, I follow recommendations on diet and nutrition, exercise, and knowing the genetics of my tumor, keeping up on latest clinical trials should I ever need one. Now that I am retired, I stay active physically and volunteer with several non/profits and civic organizations.

Thank you stageivsurvivor for your reply. Congratulations on being a 10+ year survivor. You have a wonderful regiment of diet and exercise....which I believe is a key to long term survival.

You mention that you entered a trial and were NED in 2016....(paragraph copied below) I would appreciate it if you would elaborate on this. If this is something similar that could be available to me, I need to find out more details.

"(The first chemo of Gemzar was not effective and then I was switched to an aggressive regimen of Folfirinox. It was the original formulation 20% higher than today. I did 24 cycles and 22 resting cycles of 5-FU in alternating groups of six. Just after the first six cycles a CT revealed significant shrinkage and that finding led to molecular testing by liquid biopsy. It identified a germline mutation leading to a search for a targeted therapy clinical trial. After completing SoC chemo, I enrolled in the trial resulting in a complete response and achieving NED in 2016.)

More Questions:
1). You mention that they identified a germline mutation leading to a search for molecular testing by liquid biopsy....did this occur before or after your Whipple surgery?

2). Where were you treated? What was or is the name of your doctor?

3). You mention that you had significant shrinkage to the tumor after 6 cycle, what were your CA19-9 numbers?
I ask this question because my tumor has not shrunk but my Dr. is not concerned; he was more concerned about my CA19-19 numbers going down from 813 in May 2022 to 316 July. I have read in some place that the CA-19-9 thing is not totally supported by all oncology teams..........what is your take on this?

4). How often do you have CT and PET or other scans/tests? Has the timing of this changed over the years?

Sorry for the barrage of questions. I'm a neophyte at this and anxious to learn more about how to survive this curse.

Respectfully:
tpl