Pancreatic Cancer Group: Introduce yourself and connect with others

@mnewland99 yes I do the blood test that tracks circulating DNA. My question is how did they determine the mutational change you mentioned? Was that info also provided by your test?

If so, I should ask for Guardant. I am doing the Signatera CTDNA test quarterly currently

@gamaryanne
Yes, blood sample only. It measures circulating dna in your bloodstream or cancer cells that are shedding or being actively eliminated from what I understand from the readings(I sure miss Markymarkfl being able to help us decipher through the scientific readings!

My husband was diagnosed with pancreatic cancer quite by accident in November 2024. The first sign of anything amiss was a severe spike in his A1C in October, along with a sudden diabetes diagnosis. He'd been losing weight without even trying, as well. In hindsight his doctors missed that marker of pancreatic cancer. He had an annual follow-up CT for a kidney cyst (benign) and the radiologist found the pancreas tumor(s). He was referred for an EUS biopsy (PET, other tests) that confirmed the cancer was active. He had 8 rounds of chemo, then surgery, then 4 more chemo. Scans after that showed no recurrence, and CA19-9 (normal scale 0-37) score dropped to 4.86. That was August 2025. November scan was clear, but CA19-9 had gone up to 21.56. Dr was unconcerned. February scan showed some new lung nodules (with a couple that had grown since the November scan). What? Radiology report said 'metastatic disease'. We brought this up to the dr but she didn't think it was worrisome. I (wife) pushed further until dr scheduled a PET scan. Pet showed lymph node activity in addition to small lung node. Latest CA19-9 is 37.67. Clearly something is lurking. Stay tuned. I am already exhausted and my husband is very concerned.

Carol S,
Surgery will be in two months for distal pancreatectomy by Dr. Schauffley. What were your first and second weeks after surgery like? I’m 88 and good health and on Elliquis.

I was diagnosed in June 2025 with stg 4 pancreatic cancer with peritoneal carcinomatosis, in operable due to the peritoneal tumors. I underwent an ileostomy in July 2025 for a tumor bowel obstruction at the ileocecal valve. My surgeon had all the genetic testing done on the tumor mass. I've been on Folforinox protocol and had 15 treatment infusions. I seemed to have tolerated the treatments well with no nausea or vomiting on chemo days. I find myself getting tired on day 4-7 after the chemo and it takes about a week to fully recover my energy level. We didn't start chemo until August due to my surgery. A PET scan in January2026 showed no active disease and no discernable pancreatic tumor! I call that great news. My oncologist is inclined to "stay the course" on Folforinox, and I don't disagree. I wonder if there is more, we should be looking at? I find that dealing with the ileostomy ius my greatest hardship at this time.

I am a 47 year old wife and mother of 4 children. I was recently diagnosed on 2/24/26 following some intense itching and looking jaundiced. CT scan of my abdomen in the ER showed pancreatic mass and 3 small liver lesions. Liver biopsy confirmed Stage IV pancreatic cancer. At the time I was otherwise healthy, CrossFit 4-5 times a week and eating very healthy, with no prior medical issues other than the excision of a small atypical ductal hyperplasia in my left breast in August 2024. I met with a medical oncologist on 3/3/26 who gave me little hope and said I would start chemo the following Monday. I had a second opinion on 3/9/26 with an oncologist specializing in pancreatic cancer at the University of Kansas Cancer Center who suggested a clinical trial should the testing of my cancer show I had the mutation making me eligible. But, was then told there were no spots abailable in the trial. I am scheduled to now begin chemo on 3/26. Hoping by body responds well to the chemo and am able to slow the growth and spread. This diagnosis has turned my family’s world upside down and am really struggling to stay positive and strong for them.

I am a 47 year old wife and mother of 4 children. I was recently diagnosed on 2/24/26 following some intense itching and looking jaundiced. CT scan of my abdomen in the ER showed pancreatic mass and 3 small liver lesions. Liver biopsy confirmed Stage IV pancreatic cancer. At the time I was otherwise healthy, CrossFit 4-5 times a week and eating very healthy, with no prior medical issues other than the excision of a small atypical ductal hyperplasia in my left breast in August 2024. I met with a medical oncologist on 3/3/26 who gave me little hope and said I would start chemo the following Monday. I had a second opinion on 3/9/26 with an oncologist specializing in pancreatic cancer at the University of Kansas Cancer Center who suggested a clinical trial should the testing of my cancer show I had the mutation making me eligible. But, was then told there were no spots abailable in the trial. I am scheduled to now begin chemo on 3/26. Hoping by body responds well to the chemo and am able to slow the growth and spread. This diagnosis has turned my family’s world upside down and am really struggling to stay positive and strong for them.