1. My pre-Whipple protocol was "TNT" -- Total Neoadjuvant Therapy. They wanted a "full course" (12 treatments) before surgery in case I wasn't able to get or tolerate adjuvant chemo (after the surgery). My CA19-9 was 175 before chemo and 236 six months later, after 12 rounds of Folfirinox. I don't think these were the best decisions. The pre-Whipple Folfirinox really didn't do much; seems like time wasted. As an athletic 58-year old with excellent performance status, they should have concluded I would recover well enough for adjuvant chemo. And getting no chemo after my Whipple was probably a big contributor to the recurrence growing and spreading so fast.

2. Prior to PC diagnosis, I weighed 175. Had started seriously dieting and exercising and successfully losing weight. The first 15-20 pounds were intentional, but by the time I turned yellow (jaundice) I weighed in at 145 (total span of 3 months), and that's where I was when EUS/biopsy confirmed original cancer. On 6 months of Folfirinox, I actually regained all 30 pounds. My wife is a really good cook! But the bile duct stent helped me start getting nutrition from my food again, and being less physically active made it easier to put the pounds back on. I lost 15 pounds again in 2-4 weeks after the Whipple, but have stabilized there (fluctuating between 155 and 160) for most of the last 16 months.

3. Quality of life has been OK, with variations. On Folfirinox, there was fatigue, but hope that Whipple would fix everything. Post-Whipple 3 months (despite recovery adjustments) were ecstatic because I was NED and back to jogging 3 miles. News of my recurrence came right after my dad's terminal mesothelioma diagnosis. I was his primary caregiver until his passing 9 months later, as well as struggling with some hellish aspects of my job while my wife was also having major health issues. So... there was a LOT going on to affect quality of life negatively. Most of that is now all resolved and has simplified life significantly. But my overall physical fitness took a dive in that period as much due to stress and inactivity as due to cancer and chemo. Like you, I'm down to long walks and very light weights, but with Ritalin, better sleep, and a blood transfusion, I've got a very positive outlook for a return to greatness in the near future. 🙂 Snowboarding and surfing have been out for a while. I get way too winded at sea level to even consider freezing temps above 8000' elevation, and being out in the ocean is just not wise with my currently reduced endurance. At least I can stand still like an idiot and ride my skateboard down a hill with no trouble.

4. My 5th round of Folfirinox (coupled with other factors) caused a crash that sent me to the ER, but other adjustments got me through 7 more rounds with fewer issues. GAC has really been much more tolerable for me, but I do know one patient who had a very bad reaction to Gemcitabine (lung and heart issues) and had to switch to Folfirinox. Damned if you do and damned if you don't, I guess... You should at least ask your Onc if the biweekly G+A regimen is feasible for you. It would be much easier on your body, and you could monitor CA19-9 and Signatera until the next scans to see if it's working well enough. If not, and you're tolerating the G+A, you could then either return to the 3/4 schedule or see about adding cisplatin and continuing biweekly like I'm doing.

5. Not aware of anyone with confirmed spine mets. What I had showing up at spinal T7 on my previous MRI was not reported as a concern on the follow-up MRI. They still seem to think it's only a benign hemangioma.