Husband had Whipple surgery and chemo: He's uncomfortable

My husband had Whipple (stage 2B pancreatic cancer)in Nov and is in chemo for 6 mths. His latest cat scan looks good. Oncologist is recommending another 6 mths of tx: 6 weeks of radiation combined with chemo pills. Does this sound appropriate or excessive?

Hi Joan, I'm tagging other members who have experience with stage 2B pancreatic cancer like @marvinjsturing @allis9560 @lfitz @mimishell and @anto1nette. Keep in mind that everyone is different and a treatment plan for one may not be the same as for someone else, even when you have the same stage of cancer. Other factors are also considered.

@joanalc, I think you're asking good questions and should get answers from his oncologist to better understand why they are recommending another 6 months of chemo and radiation. There are likely very good reasons. You could start with questions like:
- If the CT scan looks good, why is the additional 6 months of treatment necessary?
- Is there concern of cancer spread?
- Can we talk a treatment vacation?
- How can side effects be managed?

What questions would you add?

My dad had the 6 month chemo plan after his whipple. We were told it was to eliminate any undetectable cancer cells that might still be present. However, he was unable to tolerate the chemo due to running very high fevers and chemo was stopped after just a few weeks. He is 2 ½ years out from his surgery but is still regularly scanned to look for recurrence of the cancer. If the chemo had been better tolerated, my dad would have continued the full 6 months because the doctor felt it would maximize his cancer-free time.

My husband was diagnosed in September 2022. He was a candidate for Whipple which was originally scheduled for September, 2022. Due to high CA-19 and size of tumor our oncologist and tumor board recommended 12 rounds of chemo, 8 pre surgery, 4 post surgery. He had the Whipple on Feb 15, 2023. by week 6 he started to feel like he was getting back to himself. By week 8 he had all drains and feeding tubes out, scar is healing well. He was staged at 2A and tumor markers and lymph nodes were clear, CA-19 was 14. We (optimistically) thought he would not have to do the remaining 4 chemo infusions, however it was still recommended due to tumor size (shrank some but not by alot) and some cells were live when tumor was removed and risk of microscopic cancer cells. He had his 1st of 4 infusions on 5/3 and will complete by 6/13. As you all know, this journey is hard, scary and alot of unknowns. This Mayo site has helped me alot over the past 9 months, I feel like you are all friends. Prayers to you all.

joanalc,

My sense is that one should accept chemo, adjusting it as required to be able to tolerate it, for as long as possible - constantly doing this kills cancer cells wherever they are.

Pancreatic cancer tumors are often killed by chemo, but the cancerous cells have already spread - to a variety of locations.

I don't know what the longest should be ... if it were me, I would find a world class oncology center, and ask them to build a long term treatment plan.

Coming from a clinical research background and an understanding of cancer cell biology, when I was diagnosed initially with pancreatic cancer stage IIb in 2012, I advocated for going well beyond the recommended 12 cycles of Folfirinox to address the strong possibility of minimal residual disease. Pancreatic Cancer’s hallmark is becoming metastatic earlier than other cancers. That can result in micrometastatic disease being present and going undetected whether one had surgery or not.

My decision in doing chemo was not to buy time but to be cured even though I was at a late stage and the tumor board recommended palliative treatment. Eventually Ingot the requested chemo that ended up being 24 cycles of Folfirinox and 22 cycles of 5-FU with Leucovorin for a combined total of 46 cycles.

The treatment lasted 24 months with no pause and administered every 15 days. When treatment began I was 55 and in otherwise very good physical shape. I had no co-morbidities, never smoked and rarely ever consumed alcohol. I was a healthy eater since a young age. So I had those attributes in my favor. After two years of intensive chemotherapy I achieved NED status which means if there is any remaining disease, it was too low to be detected by conventional imaging. Going well beyond the recommended 12 cycles is what likely contributed to being declared cured by a number of oncologists. I will reach 11 years survival from stage IV disease next month.

Hello,

Where was your cancer that made you stage IIB? I was diagnosed with bile duct and pancreatic cancer 8/22; I did 8 cycles of Floforinox; then Whipple 3/14/23. My Whipple surgery kept me in hospital with double abdominal infection. My abdominal wound is still healing. I fear my cancer has spread (2 of 14 lymph nodes) are positive. What type and how many cycles of chemo should I do? I suffer from neuropathy and diabetes (new since steroids/chemo and Whipple)

If you don't mind sharing, what was the initial size of your husband's tumor? Thanks.

My tumor was in the head of the pancreas compressing the bile duct. It measured 4cm x 3cm x 3 cm. From CT and EUS the initial staging was IIb. The imaging showed close proximity to the portal vein and why a decision to do the Whipple immediately was taken as the window of opportunity was there with my tumor characterized as highly aggressive.

When I was opened in the ER, it was noted the tumor was abutting the portal vein. Fresh frozen sections were done and with concurrence of the attending pathologist, it was decided to continue. Cellular pathology of the surgical specimens confirmed there was portal vein invasion and 11/22 lymph nodes positive. I was restaged as III. One week after the Whipple a CT was done to make sure there was no intestinal blockage. There was not but the radiologist noted metastatic disease in the liver not seen in the initial diagnostic scan done two weeks earlier. The micro metastatic disease grew rapidly to the point where it was large enough to be detected.

I advocated in requesting being treated with Folfirinox and radiation if it was felt it would be beneficial. The Tumor Board chose to treat me palliatively and not more aggressively. Three months on Gemzar had no effect. All six metastatic areas in my liver were now sizable tumors. That’s when I advocated again I wanted more aggressive chemo. I communicated I knew the risks, was willing to exceed 12 cycles to address minimal residual disease that often remains after 12 cycles and why patients have progression.

I was 55 and in very good physical shape from long distance, endurance bike riding. I had no co-morbidities to impact aggressive treatment. I indicated my willingness to take as much chemo as my body could handle and was not concerned with the possibility of permanent neuropathy.

My oncologist treated me with the original formulation of Folfirinox that was used in 2012-2014 at full dose based on my body mass. I was dosed in cycles of six and that was alternated with six cycles of 5-FU with leucovorin. Then it was back on Folfirinox. In total, the combined chemo was 46 cycles with 24 being Folfirinox and 22 of 5-FU with leucovorin administer every 15 days for 24 months with no chemo holiday or delays. I had a strong will to survive and found ways to endure and persevere. It has resulted in 11 years of survival of stage IV disease and not only reaching NED status, but being confirmed cured of metastatic disease.

My Whipple at resectable/stage2 was done after 6 months of "Total Neoadjuvant" FOLFIRINOX, with Total/Neo meaning all the chemo before and none after. Intraoperative and post-op pathology confirmed cancer-free margins in the pancreas and 22 lymph nodes.

The recurrence afterward, from nothing on a 1-month MRI to 2 cm on MRI 3 months later, with mets to abdomen shortly after that, were a real kick in the gut.

Since the largest and first-noted recurrence was at the surgical site (where remnant pancreas was reconnected to jejunum), it is more likely the recurrence began there rather than as missed MRD micrometastases elsewhere in the abdomen, I think...

Nevertheless, adjuvant chemo (after the Whipple) *might* have killed any distant MRD mets and slowed the growth rate of my new primary tumor enough to react and resect before it metastasized.

As noted in a different thread, my team and I were misled by low CA19-9 levels, false negative DNA tests (Signatera and Galleri), and a false negative on EUS biopsy despite MRI findings.

Two prominent surgeons have told me the intraoperative pathology is not perfect, and a negative margin is only negative in the areas they look. Some parts can be missed.

In hindsight, I would have begged for a total pancreatectomy/cholecystectomy/duodonemectomy (rather than Whipple) right after diagnosis. The biggest deterrents at the time were: 1) lack of knowledge; 2) urgency to get on a treatment plan in haste; 3) my 30-pound weight loss before the diagnosis. Although I was in great overall health, and much of the loss was from recent diet and exercise... I just had no buffer to lose more weight as you typically do after pancreas surgery; and 4) My care team strongly recommended the plan I took.

We'll never know whether the intraoperative pathology that found clear margins was actually wrong, or whether I really was cancer-free at the margin and the remnant pancreas simply turned cancerous right after the surgery. Since I have the ATM mutation which increases one's susceptibility to PC, it could have been the latter; i.e., whatever process led to the initial cancer in the head of my pancreas simply continued its work in the rest after surgery.

Long story short:
- We discovered my diabetes and need for insulin the same week we discovered my initial cancer.
- I've required enzymes since the Whipple.
- I would have required enzymes and insulin if they had taken my entire pancreas anyway.

- I'd rather live a long life dependent on enzymes and insulin that I can manage from home than live a shorter life dependent on enzymes and insulin accompanied by neuropathy- and nausea- and hair-loss-inducing chemotherapy that I have to travel and sit in a chair for.

In other words, I wish I had swung for the fence in my first at-bat and dealt with the adjuvant chemo & its effects afterward.

There's a very good, short debate between two prominent oncologists regarding surgery-first vs chemo-first here:
https://www.youtube.com/watch?v=naQ-HlZbEoI

The Total Neoadjuvant (chemo first) approach is intended in part to help select appropriate candidates for surgery. If they assume the disease has already spread but can't be seen, they're ensuring you get a "full" treatment of chemo to kill any cells that might be hiding that could grow between recovering from surgery and starting adjuvant (post-op) chemo. If they see evidence of spread during neoadjuvant therapy, then they generally assume the surgery won't help you.

My thoughts on that are that they're treating a disease that *might* be there with a chemo regimen that *might* work instead of immediately using "the only cure" by taking out a tumor they can already see before it has any chance to spread.

Of course I'm not a doctor and I'm only a (statistically irrelevant) "sample of one", but these are questions and considerations anyone in a similar situation might want to raise with their care team at the outset.