Pancreatic Cancer Group: Introduce yourself and connect with others

@colleenyoung
This is our update - My husband's CA 19-9 has continued to rise every 3 months, 186, 380, 886 and now in October it was 4200. His scans had been negative for metastatic disease until October, his stomach lit up on a PET scan. He had an endoscope yesterday, he has a tumor embedded in his stomach. This has been missed on CT scans. We see oncology tomorrow. They will probably start Chemo Gemcitabine and abraxane.

@mcoplien Good luck with oncology tomorrow. Please let us know how it goes ok?

@seizureman
Hello, i was dx stage 4 in 11/2021. It was eartg shattering news-as i wasnt even sick! 4 years later i am still here. Im not cured but i work, volunteer and do all i can for my family and others. Its a new life for sure but know there are many survivor/thrivers out here.
It diesnt jave yo be your end at the diagnosis if your faith is strong and you perservere to see the best doctors and grt second opinions on everything!

@tomrennie
We saw Oncology today (Madison WI Carbone Cancer Ctr) - They said the area of the stomach was very close to his pancreas - the cancer probably traveled via nerve cells. He starts Chemo next week Gemcitabine and Abraxane. He was pretty clear there is no cure. They are looking for any studies that will work for mike. He might have 2 more years with chemo. he said anymore surgery is very unlikely. Luckily Mike is not very sick right now so should do well with chemo.

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.

@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?

@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.

@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.

@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?

@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.