Pancreatic cancer relapse

Posted by lilliejane2 @lilliejane2, Jul 18, 2023

Hello. I was told by oncologist that he believes the pancreatic cancer has come back after 18 months cancer free. Still waiting on biopsies of lymph nodes near what was described as possible mass near original
Cancer site. Has anyone experienced a pancreatic cancer relapse and survived long term?

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@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.

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@mnewland99 how old are you. I am 87.

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

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@johnny1955, palliative care can be a part of your cancer care team at any stage. Another term for palliative care is called symptom management or comfort care. Essentially, it is the team who are experts in managing symptoms and pain. I would inquire about the availability of palliative care services at your cancer center. They are also a great support to family members.

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