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 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!

I read your story knowing that it could be my story. I have told my family members that I only want to live if I can have a meaningful life. My idea of a meaningful life might change over time as circumstances change, but I know that at some point, I might give up on treatment and let death come. I have been learning about Hospice and know the resources in my area, but as I have no family close by, I would like to live out what time there is left closer to family, probably under hospice care. Thank you for sharing your story. Prayers with you always. Please keep in touch with the group and let us know how you are managing.

Prayers are with you. If you are not in touch with palliative care, your treatment team should be able to put you in touch. Palliative care is about improving the quality of life rather than prolonging life. Thanks for sharing your very difficult story.

The living Condition Here are worser than Living Outside That should be enough to let you Know what I had to Live Like AFTER Surgery and leaving the aftercare Facility,2 Years Ago But it at least Kept me Out of the Rain.. Now that i have been informed of this Possiblity that the Cancer may have returned I know i dont stand a chance to take kemo or radiation withou a complet Breakdown.And that is why i say no to either and just let death come.I have spoken to a Nurse who has said she can get me in a Hospic Environ..I will acept this offer after i go to get thois special scan to ratify that the Cancer is Cancer and not Scar Tissue .With That knowlege i can at least Know what to exspect in a frew months,. Thank you and Know that im ready as any who must face this and whoever You are I appreciate your advice and the Human Quality of Care you from Love Devine have Gave to me A Stranger! pEace and Blessing BE on You!

@upstairs17, that must be hard news to swallow. I think you are wise to learn about the side effects of treatment and weigh what is meaningful for you between quality and quantity of life. Keep in mind that sometimes treatments like radition can be used to help manage pain as a palliative treatment. The goal of treatment can be to keep you comfortable and not necessarily to extend life.

Have you looked into palliative care or hospice care? Do you live alone?

they told me a shadow has appeared after the Whipple surgery two years ago...They said when it returns that it is stage 4...they say that radiation or chemo will extend my life 1 to 2 years...I am alone and barely surveying, its been hell using the bathroom and waring dippers and trying to eat 6 meals a day,and the pain seem to be getting worse.in stomach, if you dont mind will you tell me the truth about radiation and chemo. i m tired of suffering and if these extension to longer life are more suffering then how long can one live without them . cause i realy dont care to live in my present state. Thanks for advice !

i know NOTHING yet But I do KNOW ONE THING and that is you guys have helped me with Both Knowledge and Kindness AND even if i do die I have what you have Given and I appreciate That! It makes you want to live and at least try and although that i not sure if i want to try different things At least im Glad to know that others are Trying to fight and Live !