Pancreatic Cancer Recurrence after Whipple

Had 6 treatment of the Gemcitabine and Paclitaxel had my CT scan they found new spots on my liver. Went and seen the clinical trial Doctor he said to stop that treatment and go back on the 5fu and all the other ones you get with the 5fu. Had 1 treatment and the clinical trial Doctor said I could not do anymore if I was going to do the clinical trial Had another liver biopsy on April 17th and I go tomorrow for more testing and I start the clinical trial on April 30th. I was so happy that I got accepted into the trial. The trial just came out in March so it's a brand new trial. Hopefully it works and I can help other people by doing this trial.

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 am at a loss right now not even sure I'm in the right place for help. I had pancreatic cancer over 15 yrs ago and had a Whipple done. I've been in pretty good health til recently and have been admitted 2 times in the hospital to get blood transfusions in just 3 months. Two weeks ago they found a mass in my lung and today I was told it's a reaccurance of pancreatic cancer and the cancer was making it hard for my body to make blood. That's really all the told me and sent me home. Things are so different now from what they were before not sure about anything. Any advice would be appreciated.

I am at a loss right now not even sure I'm in the right place for help. I had pancreatic cancer over 15 yrs ago and had a Whipple done. I've been in pretty good health til recently and have been admitted 2 times in the hospital to get blood transfusions in just 3 months. Two weeks ago they found a mass in my lung and today I was told it's a reaccurance of pancreatic cancer and the cancer was making it hard for my body to make blood. That's really all the told me and sent me home. Things are so different now from what they were before not sure about anything. Any advice would be appreciated.

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.

@stageivsurvivor Wanting to ask how you are doing now - hope just the same as in 2023. Thank you for the information and inspiration!

@katieliz Doing better than ever! Was at the American Academy of Clinical Research (AACR) special meeting in Boston on pancreatic cancer research 9/27 to 10/1. Flew to Switzerland 10/2 for hiking in the Swiss Alps. Flew home on 10/19 and have been in Philadelphia 10/21 at the Eastern Comprehensive Oncology Group-Academy of Clinical Radiology and Imaging Network ECOG-ACRIN) semi-annual meeting. I serve on its GI Cancers Committee as a research patient advocate providing input on clinical trials development from the patient standpoint.

I have exceeded 13 years survival and considered cured. The mechanism that resulted in cure was the amount and duration of Folfirinox I was able to tolerate that caused conversion of immunologically cold tumors to immunologically hot tumors where they expressed neoantigens making them recognizable by the immune system. This led to TCR lymphocytes and CD8+ T memory cells addressing any minimal residual disease leading to cure.