Pancreatic Cancer Group: Introduce yourself and connect with others

Hello,
I had a distal pancreatectomy for an IMPN last July, and an adenocarcinoma was found at that time. I am stage 1b and have had 8 Folferinox treatments, with 4 to go. Definitely no picnic (neuropathy, nausea, fatigue and heartburn). Let me know if you have any specific questions or concerns about anything, and I will try to be helpful. Wishing you the best on your journey.

Hello, I was diagnosed stage IV PCan 12/2021. Tumor in the tail as well as metastases in my liver. No symptoms until I had a clinching pain in my right side. Thought it was appendicitis!
Fast forward, I got a 2nd opinion then started Fulfurinox. 12 rounds. Everything shrunk and my markers came from 23k to 21. Did Y90 to my liver in September then 2 more rounds of fulfurinox without the ox. Markers went up.
December 7 pancreadectomy. Last check markers came down 50 points to 179. Next up a PET scan and another blood draw. One recommendation is to remove liver metastes next IF PET is good. Been through a lot in 13 months and pushing for that 5 year mark!!

What hospital are you at? We were told multiple times
that surgery is not an option once there is metastasis to the liver. My husband is also Stage 4 in tail. Mets to liver. Markers have dropped from about 5000 to under 200 and both tumor and liver Mets are shrinking on gemabraxane plus pemravulab in a trial.
At MSK in NYC

Can you explain why the surgery was considered not an option?
Also are you taking the trial treatment at SK?

We were told that because it had metastasized to the liver - there are multiple spots- that surgery is not an option.
Yes, we are in the Ptecision Promise trial at SK. His liver tumor has shrunk by about 50 percent and the liver Mets are stable and also decreasing.

I meant why they would not remove the primary tumor in the pancreas.
Mine shrunk incredibly, both liver and pancreas, during chemo. I did fulfurinox.

They said it’s very difficult in the tail but also that they don’t even try to do that if it has already metastasized to the liver, no matter how much it shrinks.
I’m hoping that some of the targeted and immunotherapies come through and that he is a candidate.
They are thinking fulforinox next when this treatment stops working- he is heading into his 11th cycle but lots of platelet issues. Otherwise he feels very well most days - can walk miles and play golf, etc

My platelets sunk regularly and sometimes delayed chemo. I came to know the symptoms but also remained quite active and never stopped working, walking, etc. just did stop cycling in case of a fall! My liver Mets shrunk together like a grape bunch so could be treated with precision after chemo (the y90). Pancreadectomy done laparoscopically in December. After 14 rounds of chemo with good results.

Hello, my name is Kathy, I was diagnosed with stage 4 pancreatic and liver tumors in 2020,.

I've been stable since 11/ 2022, I'm on no meds they stopped my lanotride shots now I see the Dr every 4 months,. MRIs, bloodwork and visit