Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 3, 2019

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let's start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

usaf | @usaf | 6 days ago

Hi,
I haven’t posted in a long time. Been over a year and a half since my surgery for pancreatic cancer. NET’S
I still cannot gain weight. Am on Lanriotide for matasis to my liver and lung and lymph nodes.
Taking 9 Freon a day at 36k units each. Anyone have any advice for me?

hakanb | @hakanb | 6 days ago

Hello, diagnosed August 2023, 12 folfirinox, 3 months gemcitabine chemotherapy. Liver metastases were destroyed by ablation operation.
Today it metastasized to the liver again.
I have no pain, I have not lost weight, my daily life continues the same. My doctor said your pancreatic cancer doesn't fit the book. Immunotherapy will start.
Does anyone have any other suggestions for treatment?

Translate : deepl

hotelkilo1 | @hotelkilo1 | 3 days ago

Discovered a tumor on my pancreas in 2006. Whipple procedure to remove the tumor, the gall bladder, 40% of my pancreas, and reposition the bile duct tube, on January 5th, 2007. Revision of pancreatic Cancer surgery, July 14th 2017.

cstewart1949 | @cstewart1949 | 3 days ago

I just got my diagnosis in October 24. Have been on chemo ever since. At first my ca. numbers were going down. They changer my chemo and now my numbers are going up. What to do next?

gamaryanne | @gamaryanne | 2 days ago

In reply to @hakanb "Hello, diagnosed August 2023, 12 folfirinox, 3 months gemcitabine chemotherapy. Liver metastases were destroyed by ablation..." + (show)

My saga is similar to yours. With one new lesion in liver I am considering SNRT alongside my systemic treatment which is currently Naliri.

joiedevivre | @joiedevivre | 1 day ago

In reply to @gamaryanne "My saga is similar to yours. With one new lesion in liver I am considering SNRT..." + (show)

@gamaryanne What is SNRT? I am also trying to learn all the terms. Recently read about Dendritic Cell Therapy after @stageivsurvivor posted about it

gamaryanne | @gamaryanne | 1 day ago

In reply to @joiedevivre "@gamaryanne What is SNRT? I am also trying to learn all the terms. Recently read about..." + (show)

So sorry! I meant SBRT. It is very targeted, precise radiation to an area.

joiedevivre | @joiedevivre | 1 day ago

In reply to @gamaryanne "So sorry! I meant SBRT. It is very targeted, precise radiation to an area." + (show)

After I commented I read your earlier posts and you did say SBRT. How many sessions and over how long? It seems that they run radiotherapy with chemotherapy.

sandrapan7 | @sandrapan7 | 23 hours ago

I was diagnosed March 4 2025. I had the Whipple surgery and have pancreatic adenocarcinoma stage 3 cancer. Receiving 6 rounds chemo called Gemzar and am on 3rd round.

gamaryanne | @gamaryanne | 15 hours ago

In reply to @sandrapan7 "I was diagnosed March 4 2025. I had the Whipple surgery and have pancreatic adenocarcinoma stage..." + (show)

Stay on it! This disease is sneaky.
If you do stop after 6 rounds pls have scans every 3 months!!!!

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