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 kakalena @kakalena

I was diagnosed in December 2024. Tumor acinar cell 4.2x4.8 cm. Involving SMV and SMA so no surgery for me either. Did 6 months of gemcitabine and abraxane with no tumor change. Am currently doing SBRT radiation with last treatment this Monday. If the tumor shrinks at least 25 percent I will be eligible to or nano-knife procedure. Tumor has to be under 3.5 cm. for nano-knife .I won't know for at least 2 months after CT scan. That gives the white blood cells time to clean up the dead tissue and get an accurate picture. Would love to know if you end up with the nano-knife and how it goes for you.

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@kakalena
Will keep you posted. Next scan is in November, might have a plan at that time.

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Profile picture for julia725 @julia725

He was treated for the ascites by paracentesis, starting every few weeks then increasing to weekly when the amount of fluid increased greatly. He passed away about 3 months after the ascites surfaced. His liver metastasis escalated pretty quickly when he became too weak from all his other complications (sepsis, GI bleed, anemia) to continue chemo.

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Really sorry to hear that. My condolences.

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Thank you, I hope any information I can offer can help others on this journey.

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Profile picture for julia725 @julia725

He was treated for the ascites by paracentesis, starting every few weeks then increasing to weekly when the amount of fluid increased greatly. He passed away about 3 months after the ascites surfaced. His liver metastasis escalated pretty quickly when he became too weak from all his other complications (sepsis, GI bleed, anemia) to continue chemo.

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I'm incredibly sorry for your loss, and so grateful for your contribution to this group! Thank you.

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Profile picture for Turkey, Volunteer Mentor @tomrennie

Is there anything being done to treat the ascites?

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He was treated for the ascites by paracentesis, starting every few weeks then increasing to weekly when the amount of fluid increased greatly. He passed away about 3 months after the ascites surfaced. His liver metastasis escalated pretty quickly when he became too weak from all his other complications (sepsis, GI bleed, anemia) to continue chemo.

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Profile picture for julia725 @julia725

The bilary stent was put in his common bile duct because he became jaundiced due to the tumor pressing on the CBD and restricting it. He was diagnosed with locally advanced unresectable PC at that time, stage III. The stent became infected twice from tumor growth into it. A radio frequency ablation was done after the 2nd infection to prevent that from happening again.
The liver enzymes became higher when the infections occurred. He developed ascites shortly after the 2nd infection that caused the sepsis. Once he developed ascites the liver enzymes stayed higher than normal. Metastasis to his liver showed up about 6 weeks after the ascites.
Higher liver enzymes can have other causes too, such as gallbladder issues, so it’s hard to know if it’s directly caused by PC. Since time is so critical it’s important to get answers asap. Each case is so different.
I’m sorry you are dealing with all of this. It’s so overwhelming.

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Is there anything being done to treat the ascites?

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Profile picture for detkamat @detkamat

Thanks for sharing this! I'm so sorry things took such a negative turn for your husband. I'm going to push the team for more answers about my father's liver.

If you're willing to share, I was curious to know more about the circumstances around your husband's stent procedure. Did he have that while being treated for pancreatic cancer? Was the liver issue a side-effect of the cancer treatment?

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The bilary stent was put in his common bile duct because he became jaundiced due to the tumor pressing on the CBD and restricting it. He was diagnosed with locally advanced unresectable PC at that time, stage III. The stent became infected twice from tumor growth into it. A radio frequency ablation was done after the 2nd infection to prevent that from happening again.
The liver enzymes became higher when the infections occurred. He developed ascites shortly after the 2nd infection that caused the sepsis. Once he developed ascites the liver enzymes stayed higher than normal. Metastasis to his liver showed up about 6 weeks after the ascites.
Higher liver enzymes can have other causes too, such as gallbladder issues, so it’s hard to know if it’s directly caused by PC. Since time is so critical it’s important to get answers asap. Each case is so different.
I’m sorry you are dealing with all of this. It’s so overwhelming.

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Profile picture for julia725 @julia725

My husband had elevated liver enzymes when his biliary stent became infected. Did your oncologist give any reasons why the numbers were going up?
When my husband first started chemo, his CA-19 declined from 1200 to 89 in the first 3 months although the tumor never shrank. The stent infection turned into a severe case of sepsis, which delayed chemo. Things spiraled from there.
Hopefully you can get some quick answers why the liver enzymes went up. Chemo seems to be the best chance of giving more time so it’s important not to delay too long if possible.

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Thanks for sharing this! I'm so sorry things took such a negative turn for your husband. I'm going to push the team for more answers about my father's liver.

If you're willing to share, I was curious to know more about the circumstances around your husband's stent procedure. Did he have that while being treated for pancreatic cancer? Was the liver issue a side-effect of the cancer treatment?

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Profile picture for gamaryanne @gamaryanne

Sometimes no growth:no shrinkage can be due to necrosis in the tumor. However with his elevated enzymes it could be that the chemo is working havoc with his liver health. Your doctor should be part of a multidisciplinary group. If he/she has no reasonable answers ask for a consult with liver specialist.

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Thank you!

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Profile picture for detkamat @detkamat

Hello everyone, I joined this group in early June and am grateful for the information and insights shared here. I'm finally adding my own questions to the conversation:

BACKGROUND: After six months seeing specialists regarding severe back pain, my father was diagnosed in May with inoperable Stage IV PDAC, spread to the liver. He's had 7 cycles of Folfirinox. The first few rounds were very difficult, but for the past two months he's been able to enjoy doing things, like going for walks and working in the garden. His CA-19-9 has steadily decreased from 1297 in June to 568 on September 8th.

He's had two CT scans: the first in April (in which his tumor was discovered), and another on July 17th. The second scan showed no growth or spread, though the tumor didn't shrink at all.

On September 8th, his eighth round of folfirinox was delayed due to elevated liver enzymes (AST, ALT and Alk Phos)

We're worried about the ramifications of delaying chemo, though I understand it happens sometimes for a variety of reasons.

QUESTIONS: If anyone here has had a similar experience with elevated LFTs, I'd be grateful if you could share your experience. Also, should we be asking my father's oncologist to consult with a liver specialist? Should we ask for more scans to make sure there aren't any blockages in the liver?

One other detail: he's in the Seattle area.

I'd appreciate any insights or resources to help us navigate this!

Thank you!

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My husband had elevated liver enzymes when his biliary stent became infected. Did your oncologist give any reasons why the numbers were going up?
When my husband first started chemo, his CA-19 declined from 1200 to 89 in the first 3 months although the tumor never shrank. The stent infection turned into a severe case of sepsis, which delayed chemo. Things spiraled from there.
Hopefully you can get some quick answers why the liver enzymes went up. Chemo seems to be the best chance of giving more time so it’s important not to delay too long if possible.

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