Pancreatic cancer relapse

@johnny1955
I was still 64 when diagnosed with ductal pancreatic cancer stage 2 to 1 lymph node. Had 6 months of 5FU chemo in 2023 after surgery in October 2022. After 3-4 months off chemo it came back to liver in 2023. and 2 peritoneal nodules showed. I was told I had an aggressive type (ATM, G12D, TP53). In Jan. 2024 UCLA dr said I had 6-11 months to live. Went on GemAbraxCis For 9 mos, then just GemAbrax for 3 mos., (2 weeks on 2 weeks off). Had Viewray focused radiation on liver in October 2024 (while still on chemo). In Jan 2025 was told I was cancer free, but put on Gem chemo just for maintenance. April 2025 cancer in liver and peritoneum came back with a vengeance. Had aggressive abraxanxe-gem chemo 3 weeks on and 1 week off. Very bad side effects. Had histotripsy July 2025 which got rid of 3 liver lesions but Guardant 360 revealed a new mutation- SMAD4 often associated with stomach or peritoneal cancer. CA19-9 went down to 60 from nearly 14,000. But side effects from chemo so bad drs thought I had bladder cancer - it took 6 months of testing and biopsies to figure I didn't. Took 3 months off chemo to give my body a rest from chemo as far as side effects. CT scan now shows cancer proliferating in peritoneum, liver, another lymph node, and lungs. I've walked, prayed rosary, worked my small environmental consulting business, go to lunch almost weekly with friends 1-2x per week; gone to mass. The suffering has been unfathomable. I have aggressive pancreatic cancer. My dad got it at 77 (26 years ago). He lived with us and lasted 8 months receiving no treatment. I had very bad asthma and allergies from age 4-18 and then again from age 36 to now, so I'm no stranger to suffering and it made my ability to get through this cancer easier. I also have diabetes, high cholesterol, high BP, and genetic heart arrhythmia probs (the last since birth). Faith helps, but your mutations are your mutations. I'm trying to stick around for my 2 adult children. It can be difficult to read, and I KNOW it's not intended the way it's posted, that God only answers the prayers of some. It's not true, He just has a different path for each of us and well if you have aggressive mutations well you will be with your loved ones sooner than others. But God will be right next to you the entire time you make this journey- just don't give up on Him or be ready to throw the towel in yourself so easily unless you are tired of fighting. God bless.

@mnewland99 how old are you. I am 87.

@colleenyoung. I do not have a palliative care team. At what stage do I need it?

@johnny1955

68

Cancer is back. Recent CT and CA19-9 confirm pancreatic cancer spread to lungs. Most of the lung nodules are too small to biopsy, but after the Tumor Panel reviews the case next week, they may be able to sample one for the diagnosis we all know is true. After that, likely 12 more rounds of Folfirinox chemo. Summer is already looking busy.

Cancer is back. Recent CT and CA19-9 confirm pancreatic cancer spread to lungs. Most of the lung nodules are too small to biopsy, but after the Tumor Panel reviews the case next week, they may be able to sample one for the diagnosis we all know is true. After that, likely 12 more rounds of Folfirinox chemo. Summer is already looking busy.

@ivy1951 I know this is disappointing. Had you been on any maintenance drugs?
How long have you been NED?

My husband has a local recurrence of pancreatic cancer 3 years post Whipple surgery in 2022. He is having digestive issues, cramps, with low appetite and weight loss after chemo of Gemcitabane and Abraxane which finished in January, 2026 and after 5 consecutive days of MRI guided high dose radiation which finished on April 3. While he is thankfully no longer in pain, the digestive issues continue despite prescribed medications. Any one else has a similar issue and if so how have you been treating it? Thanks