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 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.

REPLY

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.

REPLY

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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His name is Mark Bloomston, he's with Lee Health Oncology Group in Ft. Myers, FL.

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Profile picture for joealp1 @joealp1

The size of my tumor is similar to yours. My doctor didn't mention any issue with size being a factor relative to nanoknife. My next scan is in early November, and we too are looking for shrinkage. But if none, my understanding is that nanoknife is an option in the near future. Radiation seems to be discouraged if nanoknife is being considered. I'll post an update when new information is available.

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Who is your NanoKnife doctor?

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Profile picture for iamhany @iamhany

Diagnose 4 month ago riceved a stent 2 months ago and I feel ok for now no kimono or radiation so far

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@iamhany, welcome. I understand that you have a recent diagnosis of pancreatic cancer and received a stent 2 months ago. What is the stage and location of the cancer? Have you been given a treatment plan?

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Profile picture for kakalena @kakalena

I was encouraged to do the radiation since the chemo didn't work. Originally it was going to be the 5 1/2 week radiation since the SBRT required metal markers which would rule out the Nano-knife but the surgeon connected me with a radiation oncologist who has done SBRT without markers. So...I have my 5th and final treatment on Monday. Then it's a wait and see for 2 months.

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Thanks for that information. I'm seeing my medical oncologist this week, will pursue with her.

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Diagnose 4 month ago riceved a stent 2 months ago and I feel ok for now no kimono or radiation so far

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