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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.

carneydh | @carneydh | 2 hours ago
In reply to @mnewland99 "I don’t know if your tumor has metastasized, but it wouldn’t be out of the realm..." + (show)
@mnewland99

I don’t know if your tumor has metastasized, but it wouldn’t be out of the realm of possibility. The key is to act quickly. A common path is to spread to the liver. For myself based on posts from others on this site, I asked my oncologist for an MRI. PET scans are good, but not always 100% in diagnostics has been my personal experience. For pancreatic cancer that has spread Gemticitamine and Abraxne and maybe Cisplatin (if you have BRCA/PALB and maybe other mutations that I’m not familiar with)are much less harsh but generally effective for most people experiencing metastasis like myself. Focused radiation is something you can add to the mix if you decide. Please also consider a second opinion, even by video, if you don’t feel like drs are responding to your needs. Which state do you live in? Others might be able to give you some recommendations for 2nd opinions on where to go.

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My scans have been clear. My oncologist is just concerned that my CA19-9 has gone from 35 to 371 in the two months I have been off of chemo. I don’t really want to do more chemo.

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markymarkfl | @markymarkfl | 2 hours ago
In reply to @carneydh "Hi, my name is Dana. I was diagnosed with stage I or II pancreatic cancer in..." + (show)
@carneydh

Hi, my name is Dana.
I was diagnosed with stage I or II pancreatic cancer in June of 2023. It was approximately 2cm on the head of my pancreas. I did 3 months of chemo and had whipple surgery in January of 2024 at UCSF in San Francisco. All of the margins were clear after surgery. My surgeon wanted me to do another 3 months of chemo after the surgery. I did that and my tumor marker CA19-9 was normal at 35. My scans have been clear for 10 months. My oncologist decided to just watch it and do scans every 3 months. The problem is my CA 19-9 started to go up, and now my oncologist is suggesting more chemo, which I do not really want to do. Anyone else have this problem?

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@carneydh ,

Note: I have ZERO medical training.

35 is near the ULN (Upper Limit of Normal) for CA19-9; 371 is nearly a 1000% increase and 10x the ULN. I would ask for another scan ASAP and strongly consider resuming chemo ASAP if they can't find another definitive cause for the high reading. If it comes down with chemo, then you've *probably* got cancer somewhere.

(The above assumes you responded well to chemo before; CA19-9 came down with previous treatments and you didn't have any adverse effects. If it didn't come down with the chemo you had (e.g., Folfirinox), then see about switching it now to GAC, or vice-versa.)

Without direct evidence (i.e., scan or biopsy) of cancer it's difficult to justify chemo; you could try alternative tests (ctDNA like Signatera, Guardant, and Galleri), but they are not definitive, and subject to false negatives that would mask disease rather than reveal it.

My personal experience was having CA19-9 go down to 12 one month after a "perfect" Whipple, followed by an intermediate reading of 35 two months after Whipple and 77 two months after that with a 1.3 cm recurrence detected on MRI.

EUS biopsy, Signatera, and Galleri were all negative (didn't get a PET scan or resume chemo then, sadly), so docs recommended new tests and scans 6 weeks later. By then, CA19-9 was 277, Signatera was positive, the mass was 2 cm and suspected metastatic. Three weeks after that, CA19-9 was almost 700 and metastasis was confirmed.

I have a lot of faith in the sensitivity and correlation of CA19-9 to disease/treatment in recurrent patients if you know your baseline, track the numbers diligently, do all tests at the same lab, account for possible noise sources (other inflammatory disease, vitamins & supplements, etc).

Don't delay; PDAC can get out of hand very quickly!

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