💜 Surviving Pancreatic Cancer for 3 years and beyond 💜

I am 84 and diagnosed with stage 1 pancreatic cancer in September 2025. I tried chemo of folfirinox and did not tolerate the first treatment. So I am refusing any more treatment. The same reason you said——I’ll choose my current well being rather than treatment with the probably false hope of more years in the future. Thank you for sharing your thoughts as well.

My husband was diagnosed with pancreatic cancer in Nov 2023 - Stage 1 or 2. He had a distal pancreatectomy, splenectomy and removal of one adrenal gland. He had a portacath put in and went on Folfirinox soon after. After 3 sessions his CA19-9 markers climbed steadily. He was then put on Gem-Abraxane and scan showed he was cancer-free in March 2025. Then in May 2025, cancer appeared at the resected edge of the pancreas. He went on radiotherapy and that caused massive damage to his gastrointestinal system. He had 3 surgeries to fix the problems. The he went back on chemo - 3 sessions of a modified Folfox before he was hospitalised for pneumonia and infections to his gut. He passed on recently in his sleep. I want to close the loop here for people to understand that this is a terrible disease and each person reacts differently. I had hoped he would have more time as many here have had. He fought 2+ years. He made an effort to enjoy his time but towards the end it was really a tough fight. He only suffered mainly nausea but no pain.

My husband was diagnosed with pancreatic cancer in Nov 2023 - Stage 1 or 2. He had a distal pancreatectomy, splenectomy and removal of one adrenal gland. He had a portacath put in and went on Folfirinox soon after. After 3 sessions his CA19-9 markers climbed steadily. He was then put on Gem-Abraxane and scan showed he was cancer-free in March 2025. Then in May 2025, cancer appeared at the resected edge of the pancreas. He went on radiotherapy and that caused massive damage to his gastrointestinal system. He had 3 surgeries to fix the problems. The he went back on chemo - 3 sessions of a modified Folfox before he was hospitalised for pneumonia and infections to his gut. He passed on recently in his sleep. I want to close the loop here for people to understand that this is a terrible disease and each person reacts differently. I had hoped he would have more time as many here have had. He fought 2+ years. He made an effort to enjoy his time but towards the end it was really a tough fight. He only suffered mainly nausea but no pain.

Answering azsunshine7:
Diagnosed 11/2022 by gastroenterologist after many tests (83 years old, no health problems or medications other than for glaucoma)
Malignancy noted in pancreas; some lymph nodes affected; chemo (foflorinox regime) recommended with Whipple to follow. Quit chemo after 2-3 infusions as it was intolerable to me; had Whipple in May, 2023. Refused chemo, recovered normal life other than 30 lb weight loss to 91 lbs and digestive issues.
Diagnosed with peritoneal carcinomatosis in 2025; radiation of tumor abutting urethra. Started new chemo (Gem/Abrax, reduced dosage) approx 7/2025 which is very tolerable and lowered marker from over 1000 to 200's, more reduction to come I hope
Other health regimens: read "You Can Conquer Cancer" by Ian Gawler. Have started meditation, imaging, continued healthy diet and exercise like walking. Started Creon about 4 months ago; getting more nutrients out of my food I think.
Had Guardant mutation test: nothing cancer related
Currently feel good with little pain other than gas, just limited energy. No "concerning" issues revealed in CT scans. I feel fortunate. (Sorry about not being more specific with medical terms) My refusal of chemo that impacts my life is due to my age; I can't sacrifice the well being of my current life for the hope of more years in the future.
Carrie

@carrie40
Is Gem/abrax helping with peritoneal cancer? Thank you for sharing your story

@monterrey1997
An aggressive schedule of gem/abraxane worked - is working for me, also(3 weeks on and 1 week off). I went from a CA19-9 of 14,000 down to 60.
I've been on this combo since August. I'm trying to get down to CA of 37 or in the 40's before I ask to go on to a maintenance schedule and hoping to last on it until the RMC 6236 becomes available- praying for next year. I think or hope (rather than it be bladder cancer) that the gem is the cause of my cystitis which has been very debilitating for me. I had no problems last year when I was on gem/abraxane, but I wasn't on the aggressive schedule back then. I got off my schedule for 3 full months following MRI radiation treatment on the liver. I have an aggressive version of pancreatic cancer I've been told. Best wishes to you. Naliri didn't work at all for me.

@mnewland99
Thank you for your response. What do you mean by non aggressive schedule? Thank you in advance for the information. I’m just so worry that in the last scan many white dots appear in the peritoneal and my husband just started Grm/Abrax combo and hope it targets that too.