Pancreatic Cancer Group: Introduce yourself and connect with others

@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.

@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!

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

@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.

Hello @jules1962milkshake and welcome to Mayo Clinic Connect. I am glad to hear that you have found this site interesting and perhaps helpful. We have many members on Connect who share their stories of pancreatic cancer. I'm glad to hear that you have completed the surgery and the chemotherapy. I understand that waiting for the first follow-up appointment can be stressful.

I want to invite some other members of this group to post with you, including @stageivsurvivor and @tomrennie.

I see that you had a distal pancreatectomy and splenectomy. We have discussion groups for members who have had these surgeries. Here are some links to those discussions:
--What's recovery like after Distal Pancreatectomy and Splenectomy?
https://connect.mayoclinic.org/discussion/recovery-after-distal-pancreatectomy-and-splenectomy/
--What are others doing about pancreatic enzyme replacement?
https://connect.mayoclinic.org/discussion/pancreatic-enzyme-replacement/
How are you feeling post-surgery? Are you able to eat comfortably, or do you have any digestive problems?

Hi,my name is Julie 62 years, from Australia, I have been finding your site more interesting than the Australian sites, so I thought I would post my story on here.
I was diagnosed with PC in March 2025 after a CT for another completely unrelated pain, a 33mm adenocarcinoma tumor was found in the body of the pancreas, I was operated on 3 weeks later for a distal pancreatectomy and splenectomy, in hospital for 6 days. I then started the familiar 12 rounds of chemotherapy with folfirinox fortnightly in June 25 ,with dose reductions due to reactions from some of the drugs, I had my last round this week and am feeling more anxious and upset now than I feel when I was first diagnosed, will have scans and bloods done and see the surgeon in December 25 with results. I am now a diabetic, type 3 and am taking enzymes for digestion. I cannot say it has been the most pleasant journey but I am now on the other side and hoping and praying this horrible disease is gone, for now 🤞

@56pan My husband tolerated Gem-Abraxane (15 months!) alot better, unlike you. Folfirinox was/is worse for him. But hair fell out and eyebrows went with G-A - he looked alot like Voldemort. Once he stopped G-A because tumour developed a resistance to it, hair grew back. He's back on a modified Folfirinox.

@joiedevivre That's the exact mixture I had for 12 sessions over 6 months and was effective on my cancer. 5 cm. tumor on tail of pancreas, several lesions on my omentum and 3 lesions on my liver and all confirmed as Acinar cell PC after laparoscopic biopsy. Only thing visible after 6 mos. and PET scan was one lesion on my liver. Didn't lose my hair and the side effects weren't that bad. Had to start Gemcitibine/Abraxane about 4 mos. later due to no progress on Olaparib in a clinical trial at the NIH. Hair fell out and the side effects were considerably worse than the Folfirinox. Good luck.

Same here! Wish him all the best. Im hoping that I can learn how to get through the worst days. Thx

@blackie17 If it is any consolation, my husband who is on a 'modified' Folfox (3rd session) is having a really hard time - nausea, tummy upsets, no appetite, weight loss, fatigue.