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Pancreatic Cancer Group: Introduce yourself and connect with others
Pancreatic Cancer | Last Active: 1 day ago | Replies (2398)Comment receiving replies
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.
Replies to "I was diagnosed in June 2025 with stg 4 pancreatic cancer with peritoneal carcinomatosis, in operable..."
@larrystewart, I agree with @gamaryanne that the PET scan results are encouraging: "no active disease and no discernable pancreatic tumor!" I, too, call that good news.
Dealing with an ileostomy is an adjustment that's for sure. I think you might be inspired by this spotlight:
- Diving into life with an ostomy: Meet susanf8 https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/diving-into-life-with-an-ostomy-meet-susanbfoster/
Susan has had an ileostomy for over 20 years, and while it took time to get the "fit" right, once she did, things were better. You can connect with Susan and others living with an ostomy in this support group:
- Ostomy & J-Pouch Support Group https://connect.mayoclinic.org/group/ostomy/
I encourage to post about your challenges. The group is great at offering tips and solutions.
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@larrystewart hi Larry! Wow, this is great news.
Having been in your situation I would not necessarily second guess your physician, but it could be a great time for a second opinion. How long to stay on it…whether to cut back on the oxy.. try pill form of 5 FU… lots of things to begin considering in view of knowing we usually do become resistant at some point. However, with only 15 rounds you probably are not there yet. Cheers to NED!!!!