1. < Pancreatic Cancer

New diagnosis: locally advanced pancreatic cancer

Posted by ncteacher @ncteacher, Mar 31, 2023

I'm new to the Mayo board, but not a Mayo patient and not in MN. This week I received a new diagnosis of locally advanced pancreatic cancer. I had hoped to do surgery, but have been definitively told it's unresectable because even though the tumor is confined to the pancreas, it's wrapped around some blood vessels. So our first line of defense is chemo. I'm having a laparoscopy next week to pin down more details and complete staging, as well as install a chemo port. Questions: Does chemo ever shrink the tumor enough to do surgery to remove it? Or is something else required, such as radiation? What's the success rate for this type of pancreatic cancer? Finally, the surgeon mentioned a Tiger Pac clinical trial to me. I've poked around the internet and have a very basic understanding of this, but I'm hesitant because it seems like using an unproven treatment approach could put me in worse shape than I'm already in. I'd be interested in hearing others' perspectives and experiences. I am reeling, as you can imagine. Two and a half weeks ago, I was teaching and back in grad school; now everything has come to a screeching halt, and I am struggling to stay positive. Thanks in advance for your replies!

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

robee | @robee | Aug 15, 2023
In reply to @bobsrdoch "What was your experience with MSK and Dr. Crane?" + (show)
@bobsrdoch

What was your experience with MSK and Dr. Crane?

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He was very compassionate but upfront with my diagnosis. He felt he could help and I went thru 15 sessions of radiation in May. All scans and blood work so far have been good-Stable tumor. No metastasis and blood markers are dropping significantly. I will follow up with Dr crane again in October. 🤞🏻so far his treatment is working.

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pat125 | @pat125 | Aug 15, 2023

Hi,

I was wondering if anyone had received ONCOSIL treatment for Pancreatic cancer?
Thanks for sharing your experience.

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1 reply
gamaryanne | @gamaryanne | Aug 16, 2023

I believe you are with a very good practice. But it always makes sense to have a second opinion. Get your port-it’s necessary. But do reach out for a second opinion. Then dive into your therapy choice with a positive attitude all in!

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ncteacher | @ncteacher | Aug 16, 2023
In reply to @pat125 "Hi, I was wondering if anyone had received ONCOSIL treatment for Pancreatic cancer? Thanks for sharing..." + (show)
@pat125

Hi,

I was wondering if anyone had received ONCOSIL treatment for Pancreatic cancer?
Thanks for sharing your experience.

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I hadn't heard about OncoSil, so I googled it. Looks like this therapy is still in trial. I found this, FWIW:
https://classic.clinicaltrials.gov/ct2/show/NCT05466799

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jk77 | @jk77 | Aug 17, 2023
In reply to @frygirl777 "For neuropathy try Boiron Hypericum homeopathic pellets that you dissolve under your tongue. You can order..." + (show)
@frygirl777

For neuropathy try Boiron Hypericum homeopathic pellets that you dissolve under your tongue. You can order them from Amazon. Kali Phosphoricum is another homeopathic remedy that many people try as well.

I do know someone who cannot feel their toes 5 yrs later after 12 rounds of the 5-FU regimen. Neuropathy is the worst long term side effect of this treatment & it’s a crying shame that they are administering this treatment yet have no way to block the nerves from being damaged in your fingers & toes. 😡

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If I may: Please consider buying Boiron (and comparable products) from Vitacost. Amazon is one of the worst retailers out there. Vitacost is owned by Kroger, which isn't great, but it does less harm than Amazon.

Also, Vitacost uses green packing materials; Amazon doesn't. Thanks.

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jk77 | @jk77 | Aug 17, 2023
In reply to @ncteacher "So much has happened since I did that original post! Quickly... The cancer center where I'm..." + (show)
@ncteacher

So much has happened since I did that original post! Quickly... The cancer center where I'm a patient is not listed as an NCI center of excellence, but after some recent mergers, it's now affiliated with an NCI center. (Does that make sense?) I can't complain about the care; it's been good. I did switch oncologists. My first one was extremely negative. My new oncologist is terrific. So far, I've had six rounds of modified Folfirinox. Last one was Wednesday 7/5. I got waylaid from the regularly scheduled round on 7/24 by what turned out to be a gallbladder attack (liver enzymes and white cell count were elevated, and I had extreme nausea). Long story short, I spent a week in the hospital and underwent a bile duct stent placement and gallbladder removal (laparoscopic). My next chemo is scheduled for Monday 8/21. I'm dismayed by the delay, but it's understandable, and I'm trying to use the time to recuperate and build strength so I'm ready to resume chemo. Best news of all: My CA 19-9 tumor marker has plummeted from 1736 in mid-March to 276 on 7/24. Still too high, but the cancer is (so far) responding to the chemo. Yay!

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Fwiw, I had an unwanted three-week delay in my chemo this past May/June -- dental infection, then extraction, then elevated liver functions from the antibiotics -- but KNOCK WOOD it didn't derail my progress. My CA19-9 has continued to drop, I've finished 8 rounds of Folfirinox, and I'm tentatively scheduled for surgery (Whipple) in early October.

I wish you continued progress and good results. (I wish all of us good results!)

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