Giving hope: 5 year celebration pancreatic cancer-free

@gamaryanne , my first and most obvious recurrence was at the surgical site. Specifically, at the "anastomosis" where they tied the remaining pancreas into my jejunum. I think that's one of two anastomoses the surgeon had to make while reconnecting the plumbing. It went from invisible on MRI a month after Whipple to 2 cm 3.5 months later.

Pathology indicated clean margins there during the surgery, but the surgeon also confesses those intraoperative pathology analyses are not perfect. Still, we don't know if there were simply some cancerous cells missed at the time, or if all was truly clean then but the rest of my pancreas was just on track to turn cancerous shortly afterward. Second opinions on the pathology samples also failed to find malignant cells.

By the time we confirmed the recurrence, there were mets present in other areas of the abdomen. I forget which came first, but the peritoneal wall was second if not first. Now have more "spots to keep an eye on" on liver, spine, stomach from MRI 3 weeks ago. Two oncologists are still calling this "stable disease" with my CA19-9 decreasing (99 two weeks ago, down from 677 at start of chemo) and Signatera back to negative (0.00) for the second test in a row. Thankful for those!!! But my highest Signatera score yet was only 0.14 (before chemo started), and we know Signatera is not as sensitive for PC as we'd like.

Those two scenarios (insufficient margin despite pathology saying clean, and the possibility of remnant pancreas turning malignant later) are two reasons I encourage people to ask their surgeon whether total pancreatectomy (pancreas removal) is a viable/recommended option to Whipple.

If your whole pancreas is gone, that's one place you'll definitely never develop cancer again!

And, if you're going to be on insulin and enzymes the rest of your life anyway, it seems preferable that it be a cancer-free life.

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Context for the above: 1) You are already on insulin; 2) You have mutations and/or family history that increase your risk of cancer/recurrence; 3) There is zero evidence of mets anywhere else .

Otherwise,

"TP was not recommended as routine treatment for patients with pancreatic cancer, especially those with pancreatic ductal adenocarcinoma (PDAC)"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6511256/
"Enthusiasm for a total pancreatectomy (TP) has varied with time. Early interest in elective TP (el-TP) as a potential solution to the high rates of tumour recurrence after a partial pancreatectomy waned with a clearer understanding of the tumour biology of pancreatic adenocarcinoma." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4402052/ citing 22-year old paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4402052/#b1

In the above context, given the high frequency of recurrence (even just in the original surgical bed), it seems a fair question to ask your surgeon in 2023. 🙂

Thank you for this. It underscores my instinct not to just “wait” and have a few quarterly surveillance reports from scans and blood tests. I know someone that has been on Keytruda for 11 months with no reoccurrence and has Lynch syndrome Prior to Keytruda she 3-4 surgeries removing tumors and reorganizing plumbing.

Hi there- may I ask how long you’ve been managing your recurrence?

@jlmclain ,

Short answer:

On chemo for the recurrence since late Jan 2023, and responding well. Three months between first suspicion of recurrence and first treatment. Four months of chemo (10 infusions) since then.

Longer answer:

We saw the first real suspicion of recurrence on MRI late Oct 2022. The biopsy and ctDNA tests were negative, but CA19-9 was rising. We saw confirmation on mid-Dec 2022 MRI of the tumor growing at the original surgical site, along with positives on ctDNA (Signatera) and further rise of CA19-9.

I delayed the chance to start chemo immediately because I didn't want to be sick over the Christmas holiday while my daughter was in town, and spent about a month seeking second opinions and searching for clinical trials I wouldn't be disqualified from by starting the proposed chemo.

By mid-Jan 2023, a CT scan reconfirmed the original tumor, with CA19-9 rising even more rapidly, and an outside review of the previous MRI indicating the met might have even been there (suspicious but not clear) in Dec.

The consensus of expert opinions was that there were no "easy" (in terms of travel and side effects) trials I could start on right away, that surgery was no longer an option, and that I needed to get on some kind of systemic chemo as soon as possible, so that's the route I finally took.

My neoadjuvant treatment before the Whipple was six months of Folfirinox, with a partial response. The single tumor (pancreas head) did not grow or spread, and was successfully resected along with a ton of negative lymph nodes in June 2022.

The chemo I was offered in December was Gemcitabine + Abraxane + Cisplatin, which I felt would be inferior to the Folfirinox, based on the studies that recommended younger, healthier folks like myself do better on Folfirinox.

I was probably mistaken. I think most of the studies comparing Folfirinox against the other standards of care only compared against a 2-drug combo of (Gemcitabine + Abraxane + Cisplatin), not all three. I had also been told that people with the ATM mutation respond well to platinum-based agents, and I assumed the Oxaliplatin in Folririnox would be superior to Cisplatin, since it was a newer formulation in a newer drug combo.

Much to my surprise, the GCA combo has produced a much better response in my bloodwork (ctDNA/Signatera and CA19-9) after 4 months than the Folfirinox did after 6 months, but the jury is still out on what my recent MRI results mean.

In hindsight, I should have started the original recommendation (GCA) when first offered 6 weeks earlier. But, if the outside MRI review had revealed mets then, I might have qualified for several other trials.

In deeper hindsight, I probably should have gotten adjuvant chemo after the Whipple, but going deeper than that, I wish I had gotten a total pancreatectomy instead of "just" a Whipple.

Thank you Markymark for that info. My husband had 7 rounds of fulfironox, which didn't reduce the tumor, so dr switched him to the Gem/Abraxine. (They also told him because he was young (59) and healthy that the "more agreesive" chemo would be better for him.) I believe he gets only the two drugs, not including cisplatin. He's had 3 of those Gemcidibine treatments and is totally wiped out afterwards for days, and doesn't want to eat much. He tolerated the Fulfirinox much better; he ate better and wasn't so fatigued. I realize the longer you are on chemo, it's a cumulative effect, so maybe that's a factor. Were you more tired on the GEM/ABRax treatment? He is sleeping all the time, and the treatments are every week, with one week in between, where as the Fulfirinox was every two weeks. Also, his blood work showed problems last week with raised levels of ALT, AST and bilirubin. Dr. thinks there is blockage in bile ducts and ordered MRI to be done next week. He had a stent placed in Jan to open up the ducts. Has anyone else experienced this? Could his stent (metal) be damaged or moving around? He feels very full and cannot eat much. Also, his back pain has increased. Anxious to get that MRI done and hopefully find solution to pain.

My initial metal stent fell out after four months.. It was found by the CT scan I had done. My alkaline phosphatase suddenly was elevated over the course of two weeks. I had been scheduled for routine follow up and the stent was missing and there was still blockage. I got the second stent. When my alkaline phosphatase became elevated again, I had a follow up CT. Just showed sludge in the biliary ducts. I have started with ursodiol and the alkaline phosphatase is down. Still get an occasional cramp like the one I had when the stent fell out, but not often. Hope you find a reason for the pain and hope it can be corrected.

Thank you garden lady. That is helpful information. I got the MRCP rescheduled to tomorrow at Dana Farber, so I hope they find something to alleviate my husband's pain and eating issues.

I had stents placed in the bile duct (two of them); mine were plastic. Yes, stents can move and mine did twice - once it pushed upwards into liver and once it went downwards. In both cases, I had to have them removed and new ones placed.

Thanks so much for reply