Pancreatic Cancer Group: Introduce yourself and connect with others

I’m 55 and his story sounds a lot like mine. I go to try to get a ct guided biopsy for my liver. Plenty of tears shed here too. I asked PanCan for survivor names as well as those on here. They help show me that we can live much longer than Dr. Google says. I want to get started on my chemo. I’m glad he is getting started on his. I wish your husband and you all the best and may God be with you through all of this.

Thank you Brad. It sounds like we're in the initial shock and grief phase. I read your introduction post & f/u posts and we can definitely relate!

This is shocking news to receive. Stage IV is such a scary term. But it is just that. A term. A label. If your husband is healthy and you have smart, aggressive doctors, this can be deterred. I was dx 11/2021! I am not cured but I am still living a relatively normal life journeying through different therapies. I am on Naliri now.
Everyone’s case is different! Many have seen chemo shrink tumors off the portal vein and moved on to surgery. Try to keep him active, engaged in things he enjoys doing, and allow for chemo recovery time each two weeks. Pls also do not negate second opinions! Very important, even if you are at a pancreatic center of excellence. If you are not, pls make every effort to get to a doctor at one. Very good information in posts here. May God give you wisdom and increased faith as you walk this journey.💜

Good information Kalena. Thanks for taking the time to post it.

Wish I could "repost" this like in LinkedIn. Hopefully the anti-neuropathy regimen you are using could also work for others. There's also the booties and mittens with freezed iced pack inserts that you wear while getting a chemo that has the potential to cause neuropathy. I can't personally attest to their effectiveness, only because I got them after my treatment with abraxane was ended due to the neuropathy but others seem confident in their benefits.

Couldn’t agree more! Dennis A

https://ascopubs.org/doi/10.1200/JCO.20.01399
I spent some time reading up on chemotherapy induced neuropathy last night and over the past few days. This, in my opinion, is the best article I found. Bears out my belief that the only thing that helps is getting off chemo and plenty of time. I'll find out on July 17 after an MRI if I'm a candidate for SBRT for the two tumors I have that have been reduced due to the chemo. Liver and pancreas. If that procedure works and my oncologist takes me off chemo, I'll pass on the results here. I started on Folfirinox and am now on Gemcitibine/Abraxane. The Abraxane has made my neuropathy much worse.

My 70-year-old husband received the news last week that some tissue samples from an EUS came back as cancerous. He has a complex medical history having had bile duct cancer in 2020, a liver transplant Feb 2021, Chronic Kidney Disease and alot of other things prior to that. Since he has transplant, he has frequent blood work including the CA 19-9 done quarterly as well as some scans. His CA 19-9 started to climb last year, nothing was showing up on imaging. Since July of last year its gone from 81 to now its over 10,000. CT Scan done today shows no masses on lungs. The MRI in March didn't show much either, but the most recent EUS did see some changes in the dilation of the pancreatic duct. We live in Cleveland, OH and get medical care at the Cleveland Clinic. Today we met with the surgeon and next Wednesday will be meeting with the oncology dr. But it sounds like the plan is chemo for 2-3 months. Repeat labs and scans to see if things have responded and if he's a candidate for surgery. He also has lingering post shingles nerve pain since January 2024, so constant pain has really worn him down and he's very sedentary right now. Not a great place to be when starting the chemo journey. Our questions this week for oncology dr will be the drugs used for chemo and how often they are administered. Sounds like they plan to do chemo 2-3 months, then retest/scan to see if numbers have dropped and if he's a candidate for surgery. We've got a long road ahead of us! Wondering if scans may have missed seeing any masses or tumors with such a high CA 19-9 number its seems like maybe its been there awhile.

My husband had Distal Surgery last July 2024 and could not eat. He had lost over 40 lbs and still losing. Someone at work mentioned RSO to me so I asked Oncologist and she said she was
a big fan. He started taking that and it was amazing. He has gained back 30 lbs so far.

Not sure about that. I've had my Stent in over a year and just talked to a specialist and was told technically they have no expiration. Of course the initial plastic ones need to be replaced with metal within 3 months. Anyone out there have a metal stent that's been in for year(s) without being replaced?