Pancreatic Cancer Group: Introduce yourself and connect with others

@azsunshine7 I asked him if it would be the distal (since it’s in the body) and he said, “At the minimal”. I asked if it was the Whipple and he said no. I suspect he means the entire pancreas (and its neighbor parts) since it is in the celiac axis and a couple of arteries.

For now, I’m wondering about the Folfirinox regiment. Does everyone take a temp pump home for a day? Does everyone have to go back day 3 to have temp removed?

@pcjourney25

What surgery are they talking about?

Best 💜

Hi I’m Kathy. I was recently (Oct 31) diagnosed with pancreatic body PDAC, locally advanced with involvement of the celiac axis.

Chemo is the first plan…3 months of Filfirinox and then talk about surgery.

Can anyone tell me their experiences with this?
Thanks,
Kathy

Hello,
I was diagnosed with locally advanced PDAC in July 2024, with an ~4cm tumor in the head abutting and encasing some vasculature. Symptoms were lack of appetite, fatigue, vague abdominal discomfort not rising to the level of “pain,” but generally feeling crummy. Docs originally suspected gallstones, but imaging showed otherwise. Started FOLFIRINOX in early August. Side effects from chemo (fatigue, temperature sensitivity, nausea, lack of appetite, diarrhea, hair loss) were uncomfortable but generally manageable. Genetic testing showed KRAS G12V mutation. Continued chemo through December, then open Whipple in January 2025 (remaining viable tumor .6cm) with reconstruction of the replaced right hepatic artery. Negative margins were achieved, only one of 22 lymph nodes examined had any cancer cells, and biopsies of two liver lesions seen during surgery were negative for cancer. Next scans suggested possible metastasis to liver, although surgical changes were also possible. Continued with chemo after surgery through mid-August, but doctor removed the oxaliplatin due to worsened neuropathy in hands and feet (total 18 cycles pre and post op). After scans in June, tumor board concluded NED, so August treatment was last treatment so far. First follow-up scans were clean, CA19-9 marker still well within normal, so hoping for continued good news. Although I still tire very easily and the neuropathy has not resolved, I walked a 5K turkey trot last week and the neuropathy is mostly not painful and doesn’t interfere with function except to make walking really uncomfortable much of the time. I’m extremely grateful for results so far, especially given the terrifying statistics that were the first thing I saw after the diagnosis.

@jules1962milkshake
That is great that you can eat without so much discomfort, now. I look forward to hearing from you again as you continue this journey.

@blackie17, there are several discussions about enzyme replacements that you might find helpful, like this one:

- What are other survivors doing about pancreatic enzymes replacement?https://connect.mayoclinic.org/discussion/pancreatic-enzyme-replacement/

See all https://connect.mayoclinic.org/group/pancreatic-cancer/

How are you feeling today?

@tkr66 Be sure to check out the Acinar Cell Carcinoma FaceBook Group. There are approximately 350 members of the group with a lot of knowledge.

I was diagnosed with PACC in June 2012. I had the Whipple procedure along with a portal vein resection as my tumor was located in the head of the pancreas and invaded the portal vein. I was restaged IV as metastatic disease became detectable a week after surgery.

With the tumor on the tail of the pancreas, the surgical procedure used is the distal pancreatectomy that removes the tail and the spleen. This is a less complex procedure then the Whipple with faster recovery time.

The treatment regimen that PACC responds to best is Folfirinox. Since I was stage IV, I did full dose for 24 months that achieved No Evidence of Disease and when I was 8 years post treatment completion, declared cured. I will be 13.5 years survival in December.

The US expert for PACC is Christine C. Alewine MD-PhD at Dartmouth-Hitchcock Medical Center in Hannover, NH. When she was at the NIH-National Cancer Institute, she was conducting a clinical trial of PACC patients treated with a combination of Folfirnox the PARP inhibitor Olaparib (Lynparza). She presented a poster abstract at the American Academy of Cancr Research meeting in Chicago in June showing efficacy in using this combination. A BRCa mutation was not a requirement.

@hopeful33250 eating was horrible to start with, weight loss, diarrhoea, I am now on creon with every meal and eating much better and putting on weight.

@fdh, you can submit a request to be seen at Mayo Clinic using this form https://mayocl.in/1mtmR63

You can find the Cost Estimator Tool or request a formal cost estimate here: https://www.mayoclinic.org/billing-insurance/price-estimates

There are several cancer centers of excellence in Canada like Princess Margaret Cancer Centre, CancerCare Manitoba, BC Cancer Agency and more. Has an appointment with the oncologist been scheduled?

Hello everyone. My 27-year old son was diagnosed with advanced stage III acinar cell carcinoma. His tumor is outside of the pancreas extending from the tail and rather large. Until the final diagnosis via biopsy and laparoscopy, they went back and forth trying to decide if it was a rare pancreatic cancer or a rare stomach cancer. The first week of July 2025 he was finally diagnosed at Mayo Clinic, Rochester. We are so thankful for this team we have there.

When we were going over options at the beginning, surgery was not an option due to the size and location. The only true option at that time was chemotherapy/immunotherapy in hopes to shrink the tumor since it was taking up his stomach and pushing on his liver and other organs. He started the strongest chemotherapy FOLFIRINOX July 18th. He has had 9 treatments and his tumor has reduced significantly and now surgery is an option!! He is scheduled for an extended distal pancreatectomy, splenectomy, and cholecystectomy. Possible total. It is my understanding that because his tumor is outside of the pancreas and comes out from the tail rather than the head this is why the Whipple is not being considered an option.

I am wondering if there is anyone else my son's age or around 30 or under has been diagnosed with the same rare pancreatic cancer in this group and if so, how are you doing and what treatments did you get.