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.

Hi

I finally got my first result since I am on Landerotide. The comparison was between a CT scan that I had in Dec 2022 vs. one in June 2023. I have been on Landerotide since March.

It appears that my tumors have shrunk a little bit which is obviously great news. I did not expect this result since according to my specialist it is very common that the first scan after treatment starts might even show a growth of the cells. I will have my next result probably early December and hopefully the progress continuous....fingers crossed.

Keep your spirit up, there is a lot of possibilities out there to treat NET and NELM.

SSA = somatostatin analogues
In the UK the MDT (multidisciplinary teams) have a max of 6 weeks to review CT scans. There are two main issues: a CT scan is not as clear as a PET scan but less stress on the body. This makes it more difficult to assess any progress. The second issue is that this last scan is more seen as a benchmark scan and regression of the Tumor is apparently not expected. Will get the results coming Wednesday, fingers crossed.

Peter, what is an SSA injection?
I am surprised a CT scan in June would not return results in over a month. I hope it’s back by now and the results are positive!

Peter, what is an SSA injection?
I am surprised a CT scan in June would not return results in over a month. I hope it’s back by now and the results are positive!

Hi everyone

I have some updates on my progress. After a Whipple procedure in May 2019 recurrence of tumors on my liver was first suspected in December 2022 and finally confirmed early 2023. I was diagnosed with Stage 2, multiple well defined tumors with the largest being 2.5cm in size. My number of lesions and their locations make surgical removal currently impossible.

I started with monthly SSA injections end of March and am lucky that I have no side effects experienced so far. I had a CT scan end of June which was sent to a multidisciplinary review team and I should get their assessment next week...fingers crossed the SSA achieve what we all wish for.

Mentally the journey has been difficult, especially when I learned about the recurrence. I felt fit and never had any kind of symptoms (not even before I had the Whipple procedure). Once I learned about all the treatment options I was able to refocus my mind and I convinced myself that this thing is not ever going to kill me! Of course, deep down I know that there is a chance that I am wrong but I will deal with this as and when...

For me personally a positive outlook makes me calm and allows me to live my life as normal as possible...besides the monthly injections and the Creon I have to take with food. More importantly it also helps my loved ones to cope better with the situation.

I will keep you all updated about my journey.

Peter

Hello @pete1962

It has been a while since you last posted. How are you doing? I look forward to hearing from you. Will you post an update as you are able?