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.

Profile picture for stageivsurvivor @stageivsurvivor

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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Thank you for posting article. If I understand reading article correctly, there was no distinction between stage 3 and 4 as far as response or differentiation when setting up sample size?

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Profile picture for kevun123 @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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hello @kevun123
That’s a very interesting question. MRI might show a liver lesion (not a tumor or nodular shape) where the PET and CT might not show lesions that are small. At least this was the case for me.

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Good Morning ! My name is Sue. My husband who is 70 yrs old was diagnosed in July 2024 after going through a
whipple. He had so much inflammation throughout his body that they could not see a tumor even though they did all the relevant tests. He had lost 40 lbs and had no appetite. Our Primary Doctor sent us to an Oncologist who told us she did not think it was Cancer. A Surgeon was recommended to us and he suggested that we do the Whipple to see what was actually going on. He found a tumor that involved both the body and tail of the pancreas so he removed the body and tail and also removed the Spleen. Cancer was also found in 16 of the 20 lymph nodes that they removed.
They sent him home after 5 days without a drain. Unfortunately, he had a pancreatic leak and developed an abscess so they inserted a drain. Since then, his lung has collapsed, he developed pneumonia and also had
2 Staph infections. We are 5 Months into this and he still has the Drain in him.
He is definetely stage III and the Oncologist cannot do anything until he gets the Drain out.
I am against doing Chemo at this point and the Oncologist agrees that it would probably kill him. He has lost
an additional 40 lbs and is very weak.
I am very interested to see if anyone has experience with immunotherapy.

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Profile picture for kevun123 @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 ?

Jump to this post

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).

REPLY

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 ?

REPLY

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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Profile picture for gisele1976 @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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Profile picture for pierre59 @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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