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Moderator

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.

Profile picture for montyd
montyd | @montyd | Aug 9, 2025
In reply to @rlmbjm "I was diagnosed with stage 2 pancreatic cancer July, 8th 2024. I have my second appt..." + (show)
Profile picture for rlmbjm Beth @rlmbjm

I was diagnosed with stage 2 pancreatic cancer July, 8th 2024. I have my second appt with the surgeon tomorrow, Wednesday, June, 4th, 2025 to hopefully schedule the whipple surgery.
My tumor was wrapped around the artery when 1st diagnosed. My last scans the end of May show it is now against the artery but not wrapped around it.
I did chemo treatments July, 2024 to the end of May, 2025.
I’m currently receiving medical care at KU Medical Center in KC, KS. I’m on a waiting list to be seen by an oncologist at Mayo Clinic in Rochester, MN. for a 2nd opinion.

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If Mayo takes too long to get your appointment scheduled, then call MD Anderson in Houston TX. You need not wait for an oncologist.

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jeeplewis | @jeeplewis | Aug 2, 2025
In reply to @emoffatt "Hi. Glad to have found you. I was diagnosed in Feb 2025 and have had eight..." + (show)
Profile picture for emoffatt @emoffatt

Hi. Glad to have found you. I was diagnosed in Feb 2025 and have had eight rounds of folfirinox. I am scheduled for a total pancreatectomy on August 4, 2025. The surgery includes reconstruction of the portal vein and an artery as well as removal of the spleen , gallbladder and local lymph nodes. I have normal CA-19-9 levels and no genetic markers for Pancreatic Cancer. Plan currently calls for four more rounds of chemo post surgery--if all goes as expected.

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Good luck on the surgery!

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billedwards234 | @billedwards234 | Aug 1, 2025
In reply to @emoffatt "Hi. Glad to have found you. I was diagnosed in Feb 2025 and have had eight..." + (show)
Profile picture for emoffatt @emoffatt

Hi. Glad to have found you. I was diagnosed in Feb 2025 and have had eight rounds of folfirinox. I am scheduled for a total pancreatectomy on August 4, 2025. The surgery includes reconstruction of the portal vein and an artery as well as removal of the spleen , gallbladder and local lymph nodes. I have normal CA-19-9 levels and no genetic markers for Pancreatic Cancer. Plan currently calls for four more rounds of chemo post surgery--if all goes as expected.

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Had to do some quick research. I wish you well. I am not sure how far they have to go with my surgery yet. I am at #4 of 15 chemo treatments.
My CA-19-9 level was at 2334 a month ago.

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emoffatt | @emoffatt | Aug 1, 2025

Hi. Glad to have found you. I was diagnosed in Feb 2025 and have had eight rounds of folfirinox. I am scheduled for a total pancreatectomy on August 4, 2025. The surgery includes reconstruction of the portal vein and an artery as well as removal of the spleen , gallbladder and local lymph nodes. I have normal CA-19-9 levels and no genetic markers for Pancreatic Cancer. Plan currently calls for four more rounds of chemo post surgery--if all goes as expected.

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3 replies
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gamaryanne | @gamaryanne | Jul 21, 2025
In reply to @sandrapan7 "I was diagnosed March 4 2025. I had the Whipple surgery and have pancreatic adenocarcinoma stage..." + (show)
Profile picture for sandrapan7 @sandrapan7

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.

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

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sandrapan7 | @sandrapan7 | Jul 21, 2025

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.

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1 reply
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joiedevivre | @joiedevivre | Jul 20, 2025
In reply to @gamaryanne "So sorry! I meant SBRT. It is very targeted, precise radiation to an area." + (show)
Profile picture for gamaryanne @gamaryanne

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

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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.

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gamaryanne | @gamaryanne | Jul 20, 2025
In reply to @joiedevivre "@gamaryanne What is SNRT? I am also trying to learn all the terms. Recently read about..." + (show)
Profile picture for joiedevivre @joiedevivre

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

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

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1 reply
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joiedevivre | @joiedevivre | Jul 20, 2025
In reply to @gamaryanne "My saga is similar to yours. With one new lesion in liver I am considering SNRT..." + (show)
Profile picture for gamaryanne @gamaryanne

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

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

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1 reply
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gamaryanne | @gamaryanne | Jul 19, 2025
In reply to @hakanb "Hello, diagnosed August 2023, 12 folfirinox, 3 months gemcitabine chemotherapy. Liver metastases were destroyed by ablation..." + (show)
Profile picture for hakanb @hakanb

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

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

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1 reply
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