Pancreatic Cancer Group: Introduce yourself and connect with others

@dryheataz Hi and welcome to Mayo Connect. Are you experiencing any other changes in your body that make you concerned that it's pancreatic cancer?

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.

@tomrennie thanks for asking. I have reviewed the early symptoms of pancreatic cancer and have none of them. I do have several of the risk factors like age, overweight by a little, and consuming wine but in moderate quantities. Never a smoker or had pancreatitis, This is a cancer that scares the heck out of me because symptoms don't usually appear until the cancer has spread to other organs like the liver. I know someone who recently passed from pancreatic cancer, so I have become more sensitive.

@dryheataz i understand. When I was diagnosed in 8/22, I was stage 4, and it spread primarily to my liver. For me, the first symptoms were loss of appetite and weight, stomach gas and pain, and a lot of diarrhea. The unintentional loss of weight is a big one to look out for. Ok?

@tomrennie thanks again for your response. No loss of appetite or unintentional weight loss, jaundice or back and abdominal pain. My A1c score this past December of an increase of 6.1 up from 5.2 (Sept. 2024) was my red flag, plus some of my blood lab reports made me suspicious. I have another lab test this Tuesday checking A1c and complete blood count, followed by an appointment with my primary Mayo physician. All I know is that if I am diagnosed with pancreatic cancer, I want to catch it before it spreads and I want to get involved with treatments ASAP. I am also interested in help/support groups in Phoenix that I can reach out to. It appears to me that you are doing well with a stage 4 diagnosis and I hope that continues.

@billb720301, I bet seeing the elevated CA19-9 has you worried. As you likely know, there are several things that can cause the CA19-9 to rise, so further testing is usually required.

Have you had further testing? What did your oncologist suggest? How are you doing?

@colleenyoung
After a year of zeros on my Natera ctDNA blood test it too has gone up. Scans show cancer has returned to the surgical bed of the Whipple but not nearby lymph nodes. I am scheduled for my first infusion of Gem/Abrax this week and every two weeks until September. Caris test revealed KRAS G12D mutation. Want to explore immunotherapy with Dr Tejani to work in conjunction with chemo. Is radiation or ablation an option? I know I’m lucky/blessed that the cancer hasn’t spread further yet. Aside from constipation, neuropathy and low red blood cell/hemoglobin count, I feel pretty good. I just want to do everything I can to beat this. Hope and prayers.

Praying for you to beat this. I'm so glad you are not too sick from the treatment so you can do some normal living. Hang in there.

@colleenyoung
After a year of zeros on my Natera ctDNA blood test it too has gone up. Scans show cancer has returned to the surgical bed of the Whipple but not nearby lymph nodes. I am scheduled for my first infusion of Gem/Abrax this week and every two weeks until September. Caris test revealed KRAS G12D mutation. Want to explore immunotherapy with Dr Tejani to work in conjunction with chemo. Is radiation or ablation an option? I know I’m lucky/blessed that the cancer hasn’t spread further yet. Aside from constipation, neuropathy and low red blood cell/hemoglobin count, I feel pretty good. I just want to do everything I can to beat this. Hope and prayers.