1. < Pancreatic Cancer
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Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 3, 2019

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.

gardenlady1116 | @gardenlady1116 | Jan 27, 2023
In reply to @sprinter345 "They said it’s very difficult in the tail but also that they don’t even try to..." + (show)
@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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mamarina | @mamarina | Jan 27, 2023
In reply to @kattz1 "I've been stable since 11/ 2022, I'm on no meds they stopped my lanotride shots now..." + (show)
@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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1 reply
kattz1 | @kattz1 | Jan 27, 2023
In reply to @sprinter345 "We were told that because it had metastasized to the liver - there are multiple spots-..." + (show)
@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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1 reply
sprinter345 | @sprinter345 | Jan 27, 2023
In reply to @kattz1 "Hi Can you tell me how could possibly get into some of these trials, as I..." + (show)
@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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kattz1 | @kattz1 | Jan 27, 2023

Thank you so much ❤️ I do appreciate the information
🥰🤗

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kattz1 | @kattz1 | Jan 29, 2023
In reply to @mamarina "May I ask what treatments /surgeries youve done? Im stage 3 non resectable.dx April/22 Did gemzar..." + (show)
@mamarina

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?

Jump to this post

Hi love,
No, I've had no surgeries, radiation, however I was on the lanotride shots for a few months at 120 ml off for 2 months bad reaction, was taken down to 20 ml. No longer on them. I don't take enzymes, but I'm very careful as to what I eat. Look up joe tippion
You are in my prayers love

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1 reply
whilted | @whilted | Jan 29, 2023

Hi everyone. My mom was diagnosed with pancreatic cancer in July 2022 and was not eligible for surgery at the time due to SMA encasement, so she was recommended to start chemotherapy. She just had her 12th infusion and will have her 13th and last infusion in two weeks. Her CA 19-9 numbers peaked at around 480 and have since come down to 18. We are heading up to Mayo Clinic in less than a month to see Dr. Truty, but I am super anxious about the consult. Has anyone here gone to see Dr. Truty for cases where there is vascular/arterial involvement?

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mamarina | @mamarina | Jan 30, 2023
In reply to @kattz1 "Hi love, No, I've had no surgeries, radiation, however I was on the lanotride shots for..." + (show)
@kattz1

Hi love,
No, I've had no surgeries, radiation, however I was on the lanotride shots for a few months at 120 ml off for 2 months bad reaction, was taken down to 20 ml. No longer on them. I don't take enzymes, but I'm very careful as to what I eat. Look up joe tippion
You are in my prayers love

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Thank you for your reply Kathy
I will keep you in my prayers as well

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mayoconnectuser1 | @mayoconnectuser1 | Jan 30, 2023

whiled,

Any Whipple is difficult, and doing laparoscopic Whipples is very difficult. Vascular/arterial involvement is not uncommon.

That said Truty and Kendrick at Mayo are two of the most experienced in the world.

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mdbray | @mdbray | Jan 30, 2023

I was diagnosed Feb. 1 2022. I've had chemo, SBRT radiation and robotic surgery to get the Whipple procedure. However, the surgeon discovered that I had carcinomatosis and that the tumor had sprayed itself all over my peritoneum and he didn't do the Whipple. He took 6" of my intestine and created a bypass over the top of my pancreas so I could digest food in the coming months. I asked him how much time I had and he said 6 to 8 months. He said chemo would add about 4 months to my lifespan. I feel good and not experiencing any pain. I had PET scans and CT scans and the carcinomatosis didn't show up at all. I had been diagnosed at Stage 1B. Does anyone know if immunotherapy can keep the cancer from growing?

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