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.

Thank you so much ❤️ I do appreciate the information
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@kattz1

Hi
Can you tell me how could possibly get into some of these trials, as I have multiple tumors in my liver also non operable , tail end pancreas tumor 32 by 21.
Thank you 🤗🥰

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The Precision Promise trial is running at multiple hospitals nationwide. Both NYU and MSK suggested this same trial for my husband. If you are at a major cancer center your oncologist should be able to suggest appropriate trials. Otherwise, PanCan can assist if you provide them with your genetic report, etc
They sent me a list of hundreds. Different stages, different hospitals, etc
There is lots of info somewhere on this Mayo site about how to find trials. I wish you the best.

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@sprinter345

We were told that because it had metastasized to the liver - there are multiple spots- that surgery is not an option.
Yes, we are in the Ptecision Promise trial at SK. His liver tumor has shrunk by about 50 percent and the liver Mets are stable and also decreasing.

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Hi
Can you tell me how could possibly get into some of these trials, as I have multiple tumors in my liver also non operable , tail end pancreas tumor 32 by 21.
Thank you 🤗🥰

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@kattz1

I've been stable since 11/ 2022, I'm on no meds they stopped my lanotride shots now I see the Dr every 4 months,. MRIs, bloodwork and visit

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May I ask what treatments /surgeries youve done?
Im stage 3 non resectable.dx April/22
Did gemzar / abraxane and mri proton radiation
Next scans in march
I have 2 stents bile and duodenal. Still have bathroom issues. Are you taking enzymes?

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@sprinter345

They said it’s very difficult in the tail but also that they don’t even try to do that if it has already metastasized to the liver, no matter how much it shrinks.
I’m hoping that some of the targeted and immunotherapies come through and that he is a candidate.
They are thinking fulforinox next when this treatment stops working- he is heading into his 11th cycle but lots of platelet issues. Otherwise he feels very well most days - can walk miles and play golf, etc

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Your story is an inspiration to me. Thank you for sharing.

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I've been stable since 11/ 2022, I'm on no meds they stopped my lanotride shots now I see the Dr every 4 months,. MRIs, bloodwork and visit

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Hello, my name is Kathy, I was diagnosed with stage 4 pancreatic and liver tumors in 2020,.

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My platelets sunk regularly and sometimes delayed chemo. I came to know the symptoms but also remained quite active and never stopped working, walking, etc. just did stop cycling in case of a fall! My liver Mets shrunk together like a grape bunch so could be treated with precision after chemo (the y90). Pancreadectomy done laparoscopically in December. After 14 rounds of chemo with good results.

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They said it’s very difficult in the tail but also that they don’t even try to do that if it has already metastasized to the liver, no matter how much it shrinks.
I’m hoping that some of the targeted and immunotherapies come through and that he is a candidate.
They are thinking fulforinox next when this treatment stops working- he is heading into his 11th cycle but lots of platelet issues. Otherwise he feels very well most days - can walk miles and play golf, etc

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@sprinter345

We were told that because it had metastasized to the liver - there are multiple spots- that surgery is not an option.
Yes, we are in the Ptecision Promise trial at SK. His liver tumor has shrunk by about 50 percent and the liver Mets are stable and also decreasing.

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I meant why they would not remove the primary tumor in the pancreas.
Mine shrunk incredibly, both liver and pancreas, during chemo. I did fulfurinox.

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