Pancreatic Cancer Recurrence after Whipple

@valerina30 Thank you so much for letting me know. I think they checked for colitis too but will have to review her chart. She’s had two RBC transfusions and 4 platelets so far this week. Still hospitalized.
Her 5th FOLFIRINOX chemo is next Wednesday but our family, as well as the oncologist, agree that at this rate she wouldn’t be able to have her regular chemo.
We are reviewing a few options:
1. Switching to gemcitabine and ambraxane
2. If it is determined that irinotican is the issue then o on FOLFOX by omitting irin.
3. Modify FOLFIRINOX dosage to 80%. But even with modifications we are afraid the severe diarrhea and blood loss may persist.

Not sure if anyone else has had GI issues that include shedding of lining, blood in stool and diarrhea, if so, what solutions did they have, if any.

@vp02 I also had low platelets and needed blood transfusion. Doc told me I had chemo induced colitis, which I got real crampy an had a lot of blood in stool. I am also on Elequis. So basically I think it’s the colitis to that sent me to hospital.

@stageivsurvivor What are your thoughts on Nalirifox vs Folfirinox? Same thing or better? Nalirifox is a chemotherapy regimen that consists of 4 different medicines, 3 of which are chemotherapy agents and one is similar to folic acid (from Drugs.com):

Onivyde (irinotecan liposomal), a chemotherapy agent encapsulated in a liposomal base to allow for more sustained blood levels of irinotecan
Oxaliplatin, another chemotherapy medicine that is a platinum-based alkylating agent that forms cross-links in DNA
Fluorouracil, an antimetabolite chemotherapy treatment that disrupts the formation of DNA
Leucovorin is a medicine similar to folic acid that is used to protect healthy cells from the side effects of chemotherapy agents.

Thanks!

No radiation. I did specifically mention that I was willing to go through it if necessary when I was advocating for the more aggressive chemo using Folfirinox. I was reading the latest scientific papers in 2012 when I was diagnosed and the European pancreatic cancer oncology community was doing clinical studies. I was having such a robust response to Folfirinox that they felt there likely be no benefit. And in the end it was the additional chemo cycles that took care of any minimal residual disease.

@katieliz Hi! My mom had platelets and RBC infusion fur to having to severe bleeding rather than just FOLFIRINOX causing it. What caused the bleeding is the hemorrhoids from severe diarrhea after 3rd round of chemo, and norovirus. She was on Eliquis for liver thrombosis which exacerbated this problem. Her levels are good now since they have platelets. Have they offered that to you?

P.s. I also come to read @stage4survivor ’s posts to induce a daily dose of positive reinforcement and hope.

@stageivsurvivor I definitely want to achieve long term survival, your story is inspiring! I am getting good reports right now, but it is the sneakiness of this cancer, coming back, that concerns me. I had 8 rounds of full blast fulfirinox, 5 before the Whipple, 3 after, but the dosage was lowered last cycle as my platelets were too low to continue, and so had had 6 wks of delays after the last 2 rounds, still too low after the last round with reduced chemo so again delayed. I have asked if there’s anything I can do to raise my platelet count but have been told that it just takes time. So now have 3 rounds left, hoping to get going again within the next two weeks. If you know anything I should be doing/trying, I’d appreciate it. I have been very fortunate in some ways, the cancer was stage 1, on the head of the pancreas, Whipple went well. But I want to do all I can to keep going, more than a year or two, expecting my first grandchild in February, and my first published book is coming out in 2027. Thank you

@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.

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

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.