Pancreatic Cancer Recurrence after Whipple

My story is a little different but worth telling here. I had a Whipple procedure in 2012 and was staged as III, locally advanced, borderline resectable. Surgical margins were clear. There was portal vein resection required and pathology showed invasion into the vascular wall. Eleven of 22 lymph nodes were positive. One week after surgery a CT was done and the radiologist noted suspicion of metastatic disease to the liver. It was not large enough to be seen two weeks earlier at the time of the initial CT scan. So this was how I ended up having a Whipple and being stage IV…..it had not been detected prior to surgery that was done a couple of days after the initial diagnosis. No cure was to be achieved for me by having the Whipple.

My first thoughts on treatment were to find a clinical trial. To make the search easier, molecular profiling was done and a liquid biopsy revealed a germline (inherited) mutation. So now I knew the type of trials to focus my search on. A trial matching my criteria would take 14 months so in the meantime, standard of care chemo was required. Standard of care is just what it means….and it was not going to give me the longevity in survival I was looking for. I knew I would require better than SoC and strongly advocated for more aggressive chemo.

The “gold standard” of chemotherapy regimens in 2012 as it is today is Folfirinox. Administering 12 cycles is the number selected that is felt to achieve No Evidence of Disease (NED) and yet be tolerable by the majority of patients as adverse events, side effects and peripheral neuropathy are concerns. Few oncologists explain what NED means, especially in how it is determined. The goal of the oncologist is to knock the disease down low enough that it is not detectable by current sensitivity by imaging such as CT, MRI or PET. It is hoped that at this level, one’s immune system can keep any minimal residual disease (MRD) in check. As long as one continues to have a robust immune status, the MRD is held in check. But is the immune system comes under challenge and gets compromised, MRD can come back and usually in a more aggressive form.

Knowing this is why I advocated for more aggressive treatment with Folfirinox. Rather than stopping at 12 cycles, I indicated my desire and committed to doing as much as my body would tolerate. Thankfully my oncologist honored my request. Because neuropathy would likely be experienced and could become permanent, he decided to treat with six cycles of Folfirinox (FFX) followed by six resting cycles of just 5-FU with Leucovorin. After those six cycles, it was back to full-dose FFX for another six cycles. This alternating dosing regimen went for 24 months resulting in a total of 46 cycles of 24 FFX and 22 of 5-FU. At that point, a clinical trial opened that I met the criteria for and enrolled after a two week washout period. After the final 5-FU treatment, all liver metastasis had shrunk 80% and it was believed only scar tissue was being observed on imaging.

The clinical trial was designed to target a gene mutation for maintenance monotherapy. Many oncologists feel it was the excessive FFX that destroyed any MRD and the clinical trial drug has helped in preventing any new primary tumor from forming in the residual pancreas as I have a lifetime risk from that gene mutation.

Anyone can say to their oncologist they want to survive and be cured. Saying and doing are two very different things. I was 55 years old and strong physically from having done 100-200 mile bike rides per week. I was also strong emotionally and mentally. I set realistic expectations that setbacks might be encountered. I found ways to tolerate the treatment, deal with a setback and then move forward. I stayed focused on my goal and had the determination and very strong will to survive. In 2016 at the conclusion of the trial I was declared NED. It was likely I was already NED at the conclusion of the FFX treatments. In 2022 I was informed by a number of pancreatic cancer oncologists that they consider me cured. In a few months I will be celebrating 11 years of survival of having had stage IV disease.

I tried to dm you on reddit pancreatic cancer site and had a error and it wasn't sent. Is it possible to send you a private message?

Are you u/pancreatic survivor on reddit pancreatic cancer site? If so, can I personal message you and tell you about my experience and get some advice. You will understand why I hesitate to share here when you read what I have to say.

I was diagnosed September 30,2021 with Stage 4 pancreatic cancer that covers my major blood vessels. I was stage 4 both because of location and because of liver metastasis that was too small to biopsy. I took oxaliplatin for 10 rounds along with campostar, leukovarin, and 5fu. I have continued on and am still on the last three chemo agents. I got pretty severe neurological dude effects from the oxaliplatin that have gradually improved over the last year. I have had two PET scans that show the tumor has died in the pancreas and the liver lesions are no longer there. My Ca19-9 is 24. I am continuing on chemotherapy. My oncologists are researching what to do next. Has anyone gone into full remission from chemotherapy? What was your treatment plan?

I went into full remission after chemo, though there was a diffuse area in the pancreatic bed that was of concern, but not clearly cancer at that point. I had 10 sessions of SBRT in April 22. Since then I have had two 3 month surveillance appointments with numbers good and scan not showing any changes or metastasis. However, in just the past 4 weeks I had new CEA and CA19-9 tests and tumor markers are increasing. I have been in remission about 1 year and have felt great--no problems. I still feel great, however, now tumor markers are trending up rapidly, scan is still stable, but I have converted from ctDNA negative (a good thing) to ctDNA positive (a bad thing) in just the past 4 months. I think surveillance with blood work and scans are often the next step. I have enjoyed being in remission despite the ongoing uncertainty, but now I am clearly having a recurrence and need to look at next steps. I will be asking about this in my own post on the forum soon.

Can you tell me what type of scans you had and how often. I do not secrete CA19-9 so I can't use that as a marker. My CEA is only slightly high and has fluctuated. If I go off of chemo I wonder what scan will be a accurate assessment when the tumor could be scar tissue and show no change.