Husband had Whipple surgery and chemo: He's uncomfortable

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.

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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.

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I would like to share my story of pancreatic cancer and the whipple surgery. I was having cataract surgery in August 2018 when the anaesthetist noticed my eyes were yellow. Long story short, they sent me for some bloodwork and scans where they discovered the bile duct was blocked and thus the jaundice and suspected pancreatic cancer. I had whipple surgery on September 12, 2018 where they discovered a tumor on my pancreas, followed by 11 bouts of chemo (couldn't do the last 1 due to how hard it was on me). I lost 30 lbs before and after the diagnosis. But have gained back about 15. I was 75 at the time of diagnois, in great shape. Played pickleball twice a week, babysat for a toddler granddaughter and was involved in many other activities. I had never had any other health problems so guess that all helped me in the long run. I will turn 80 in July and have a trip planned with family to visit Portugal this month. So you can say, I am doing well after almost 5 years. So anyone out there that is diagnosed, do not give up.

For anyone out there who has had the whipple, and chemo -I have a couple of questions. Do you have neuropathy in your feet? I still do - this is from the chemo. Also, I feel like something is pushing constantly inside me - could this be from scar tissue - or is it because of the surgery - the reattachment of the organs. I guess I am looking for common symptoms from others. Thanks for reading my post.

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I was diagnosed with stage three in Jan 2021. Had Whipple surgery followed by 12 folfirinox treatments. I also have neuropathy in my feet and hands. Also just found out I have a hernia at the surgical site. Am on insulin and creon. All are a small price to pay to still be alive! Bloodwork seems to indicate something is going on (rising CA19-9 and liver enzymes) but so far nothing shows on CT scan. Best wishes!

Jump to this post

I would like to share my story of pancreatic cancer and the whipple surgery. I was having cataract surgery in August 2018 when the anaesthetist noticed my eyes were yellow. Long story short, they sent me for some bloodwork and scans where they discovered the bile duct was blocked and thus the jaundice and suspected pancreatic cancer. I had whipple surgery on September 12, 2018 where they discovered a tumor on my pancreas, followed by 11 bouts of chemo (couldn't do the last 1 due to how hard it was on me). I lost 30 lbs before and after the diagnosis. But have gained back about 15. I was 75 at the time of diagnois, in great shape. Played pickleball twice a week, babysat for a toddler granddaughter and was involved in many other activities. I had never had any other health problems so guess that all helped me in the long run. I will turn 80 in July and have a trip planned with family to visit Portugal this month. So you can say, I am doing well after almost 5 years. So anyone out there that is diagnosed, do not give up.

For anyone out there who has had the whipple, and chemo -I have a couple of questions. Do you have neuropathy in your feet? I still do - this is from the chemo. Also, I feel like something is pushing constantly inside me - could this be from scar tissue - or is it because of the surgery - the reattachment of the organs. I guess I am looking for common symptoms from others. Thanks for reading my post.

Jump to this post

I was diagnosed with stage three in Jan 2021. Had Whipple surgery followed by 12 folfirinox treatments. I also have neuropathy in my feet and hands. Also just found out I have a hernia at the surgical site. Am on insulin and creon. All are a small price to pay to still be alive! Bloodwork seems to indicate something is going on (rising CA19-9 and liver enzymes) but so far nothing shows on CT scan. Best wishes!

Jump to this post