Pancreatic Cancer Recurrence after Whipple

Hello @survivorswife2016

So good to see a caregiver join the NETs Support Group. I am so glad to see that your husband is seven years clear now. That must be very encouraging for you both. How frequently does he have follow-up scans and tests?

I look forward to hearing from you again. Will you post an update as you are able?

Hello @joannc63,

It has been a while since you last posted. Are you continuing with chemotherapy? How are you feeling?
Will you post an update as you are able?

Hello @joannc63,

It has been a while since you last posted. Are you continuing with chemotherapy? How are you feeling?
Will you post an update as you are able?

Hello,
The Nalirifox doesn't contain oxalplatin. I was originally on Folfirinox. I had neuropathy from it. So you may not nauropathy with this new regimen.
Best of luck to you and keep me posted.
JoAnn C.

Hello,
The Nalirifox doesn't contain oxalplatin. I was originally on Folfirinox. I had neuropathy from it. So you may not nauropathy with this new regimen.
Best of luck to you and keep me posted.
JoAnn C.

Your story is so familiar. I see it from a different perspective as the spouse of a Cancer patient. Whipple Chemo and radiation all done in August if 2016. My husband health and mindset mirror yours very closely. Almost 7 years clear and now elevated CEA levels and some exhaustion are making him a bit nervous. Hopefully all will check out ok and he will remain positive for whatever fight we may encounter.

Your story truly is inspirational and God bless you for your strength, endurance and positive attitude. Sometimes it truly is mind over matter that makes the difference.

Congrats and thanks for sharing your journey!

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 think that you have Understood the True meaning of Heaven.It is a State of mind which comes when u Understand that You Value All your earth Life to the Very End and That is Life and that is Contentment and to Know to be CONTENT is to be HAPPY= HEAVEN!.. RIGHT HERE!....SMILE!