Pancreatic Cancer Recurrence after Whipple
Hello. I had the Whipple surgery on 6/30/2020 for stage 3 Pancreatic cancer. I found out on 2/17/23 via CT scans that it is back in the pancreatitis bed and a noldule in my liver. I see my oncologist in 2 days to go over starting chemo again. I have back pain and abdominal pain from the recurrence. Has anyone had luck with chemo when the cancer returns? I hope the oncologist can get the tumor to shrink. I guess I am just looking for hope maybe this can get under control. Thank you.
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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.
Wow! You are a beacon to all who need hope!
Newly diagnosed with PC.
Lesson? NEVER GIVE UP!
@joannc63 Please keep us informed. My father has also been experiencing pain similar to what he was experiencing before the whipple, in his abdomen and back. I HAVE read though, that it is possible to still feel tumor pain even post whipple without there even being a tumor present. But I've only read that once, so.. Phantom pains are a thing, I guess. But, please keep optimistic above all.
Thank you for sharing. You certainly are a beacon of hope and strength.
I agree. Keep persevering.
Thank you. I will keep you posted. My oncologist decided to do a new round of CT scans since my tumor markers were consistently going up since my last 2 visits and I also wasn't feeling well. I will see her tomorrow regarding the new therapy I will be starting this week.
You are amazing. I will keep your persistence in mind as I make my way along this journey. I will be getting my 6th treatment. I carry the BRCA1 gene and have had a previous breast and ovarian cancer. What was your clinical trial drug?
My mom was 2b at diagnosis. Had chemo and radiation which did very little, but they went ahead with Whipple. She had been in remission for almost 3 years until a CT scan followed by PET confirmed the worst. Mets to ovary and bladder. She is now back in treatment. Chemo and radiation. Both her oncologist and radiologist have given her reason to believe they might be able to beat this down again and get her back to remission. Of course, we don't know for sure if this will work, but we're hoping! New therapies and discoveries are happening every day, so keep pushing through!
Yes! Never give up. With all cancers we know that our lives will constantly be under surveillance. Especially with this one. We must read all that we can and pray for wisdom on each next step! In between, we must live our lives to the fullest-even if we are one never diagnosed with cancer! Our eternity is not promised here on Earth..