Pancreatic Cancer Group: Introduce yourself and connect with others

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.

@kevun123

Hello,
My 73yo dad was diagnosed last month with a 2.9 lesion on the head. His CA19-9 was 8000. The scans showed no spread. He is a candidate for whipple but they will start with folfirnox first and after surgery. The CA19-9 is very alarming. He is supposed to start chemo friday 12/13 but his CA19-9 just came back 10000. Pet scan and ct scans still show no spread. Why is his level so high ?

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CA19-9 of a single reading is not of much value at this point. It is only a single datapoint in time and is too early to indicate a trend when chemo is just starting. It is a well known, documented fact with mode of action elucidated by researches as to the cause of the observation in its rise at the start of chemo.

This scientific paper will explain about tumor burden, CA19-9 and the rate-limiting factor of the liver enzyme that has to process a growing backlog of CA19-9 being released as chemo begins causing cell death through DNA damage resulting in the process of apoptosis.

Increase in CA19-9 in early chemotherapy treatment cycles
https://www.sciencedirect.com/science/article/pii/S2468294221000952
(This was the article I was looking for topost to your DM inquiry on Reddit).

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Hello,
My 73yo dad was diagnosed last month with a 2.9 lesion on the head. His CA19-9 was 8000. The scans showed no spread. He is a candidate for whipple but they will start with folfirnox first and after surgery. The CA19-9 is very alarming. He is supposed to start chemo friday 12/13 but his CA19-9 just came back 10000. Pet scan and ct scans still show no spread. Why is his level so high ?

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In my case, the surgeon did an exploratory “look” before scheduling surgery. In fact, that took place months before he felt I was surgically ready with the most curative outcome.

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Massachusetts. They stopped the surgery because there was a spot on his liver

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@gisele1976

I am the wife and support person of a pancreatic cancer sufferer. He just had an aborted Whipple procedure last month. I am here for educational purposes and support for both of us.

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@gisele1976
Sometimes or usually the surgeon starts with laparoscopy before surgery. This is where they make a few cuts into the lower abdominal area to see if there are any vessels wrapped around the tumor and if so, then they must abort the original intended surgery. Is this what happened in your case? There are centers of pancreatic excellence that deal with this delicate type of surgery. Which state or country are you located?

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I am the wife and support person of a pancreatic cancer sufferer. He just had an aborted Whipple procedure last month. I am here for educational purposes and support for both of us.

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@pierre59

Good day
I am Pierre Lombard and we stay in South Africa. We are based next to Kruger Park in a town known as Phalaborwa.

In May 2024 I was diagnosed with pancreas cancer in the tail that closed ducts of the pancrese and gal bladder.

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Hello @pierre59
Are you receiving chemotherapy and/or scheduled for a distal surgery? I had my distal surgery 2 years ago. It’s so amazing that this forum connects us all over the world! How are you feeling now?

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@rotan50

Just starting my journey. I live in Atlanta, GA. Currently being seen at Emory Winship Cancer Institute. Anyone have experience with Winship or have recommendations for the Atlanta area for treatment.
I have a 15mm lesion on the pancreas head with 6mm duct dilation. Having some abdominal pain and new onset of type 2 diabetes. Scheduled for EUS with fine needle aspiration next week. Lesion identified on 11/28 by CT Scan. 12/5 CA 19-9 : 236. Feeling Positive

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@rotan50
I am also in atlanta area. Diagnosed stage IV in 2021 and still kicking!
Good care with very experienced physicians is critical. I will DM you.

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@rotan50

Just starting my journey. I live in Atlanta, GA. Currently being seen at Emory Winship Cancer Institute. Anyone have experience with Winship or have recommendations for the Atlanta area for treatment.
I have a 15mm lesion on the pancreas head with 6mm duct dilation. Having some abdominal pain and new onset of type 2 diabetes. Scheduled for EUS with fine needle aspiration next week. Lesion identified on 11/28 by CT Scan. 12/5 CA 19-9 : 236. Feeling Positive

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Dr. Eddie Abdallah at https://atlantaliverandpancreas.com/ is very well respected in your area.

Hopefully @gamaryanne can chime in or contact you directly with more info.

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@marciak9

I’m sorry for your diagnosis. I’m in Minnesota. Just wanted to welcome you to the group. Lots of knowledgeable people here if you have questions. Best luck.

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Thx

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