1. < Pancreatic Cancer
Moderator

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.

stageivsurvivor | @stageivsurvivor | Feb 17 1:08pm
In reply to @56pan "I was diagnosed with pancreatic cancer on Aug. 27, (my birthday, mind you), of 2023. 6.1..." + (show)
@56pan

I was diagnosed with pancreatic cancer on Aug. 27, (my birthday, mind you), of 2023. 6.1 cm long tumor on head of the pancreas, several lesions on my omentum and 3 lesions on my liver were found wih a CT scan. Started chemotherapy, (Folfirinox), in Sept of '23. The tumor and lesions were found on a CT scan on Aug. 28. Tumor and lesions were all positive for cancer after a biopsy was done. Took chemotherapy for 3 months, had a PET scan in Nov. which clearly showed the tumor. Had another enhanced CT scan on Jan. 4 of this year. After the 3 months on chemo, the tumor was not visible on the scan, neither were the lesions on the omentum and 2 of the 3 lesions on my liver were gone. The largest lesion on my liver had been reduced in size by 1/2. My oncologist said "this is very good news." I had to agree. The reason I'm posting here is that the cancer I have is acinar cell adenocarcinoma. I did have the defective BRCA2 gene. My CA19 level was normal back in Sept. I was told, and confirmed with some research, that acinar cell adenocarcinoma is extremely rare. Only 1% of pancreatic cancer cases. I was wondering if anyone on this forum has had acinar cell adenocarcinoma and would very much like to hear how chemotherapy worked for them. Thank you for your time and any information.

Jump to this post

I was diagnosed in 2012 with stage IV acinar cell carcinoma. This type by itself does not show elevation in CA19-9 by itself as acinar cells do not secrete this biomarker. A rise in CA19-9 may have been the result of an inflammatory process secondary to your PACC tumor.

I also have a germline BRCA2 mutation and after 24 months of more aggressive treatment with Folfirinox beyond what is done for standard of care for which I had to advocate for, I was the first pancreatic cancer patient in the US to enroll in the RucaPANC clinical trial testing a PARPi inhibitor called Rucaparib (Rubraca) which is a biosimilar to Lynparza. By the conclusion of the trial, I had a complete response to the PARPi and was allowed by the FDA to continue on it as it as an application for FDA approval has not yet been made.

I am the longest former pancreatic cancer patient in the world on this PARPi for maintenance monotherapy at 9.5 years and have been declared not just N.E.D., but cured of metastatic PACC and thriving 11 3/4 years after my diagnosis.

REPLY
1 reply
gardenlady1116 | @gardenlady1116 | Feb 17 6:13pm

You can get started by reading, hope you will find this general information a good start helpful. Hope your treatment goes well and that you will share your story with our group. I have found I learned so much from everyone who participates here.
PANCREATIC ACTION NETWORK
https://pancan.org/facing-pancreatic-cancer/patient-services/?s_src=patient+services_google_adwords&s_subsrc=patient+services_goo
JOHNS HOPKINS MEDICINE
https://www.hopkinsmedicine.org/health/conditions-and-
diseases/pancreatic-cancer/pancreatic-cancer-treatment
AMERICAN CANCER SOCIETY
https://www.cancer.org/cancer/types/pancreatic-cancer.html
Just to get you started with your reading. I think everyone who is part of this group would agree that you establish a relationship with a pancreatic cancer center of excellence, if you aren't close enough to be treated at one, then at least to have regular evaluations for an opinion as to how the treatment is going.

REPLY
nbreeze | @nbreeze | Feb 18 7:50am
In reply to @56pan "I was diagnosed with pancreatic cancer on Aug. 27, (my birthday, mind you), of 2023. 6.1..." + (show)
@56pan

I was diagnosed with pancreatic cancer on Aug. 27, (my birthday, mind you), of 2023. 6.1 cm long tumor on head of the pancreas, several lesions on my omentum and 3 lesions on my liver were found wih a CT scan. Started chemotherapy, (Folfirinox), in Sept of '23. The tumor and lesions were found on a CT scan on Aug. 28. Tumor and lesions were all positive for cancer after a biopsy was done. Took chemotherapy for 3 months, had a PET scan in Nov. which clearly showed the tumor. Had another enhanced CT scan on Jan. 4 of this year. After the 3 months on chemo, the tumor was not visible on the scan, neither were the lesions on the omentum and 2 of the 3 lesions on my liver were gone. The largest lesion on my liver had been reduced in size by 1/2. My oncologist said "this is very good news." I had to agree. The reason I'm posting here is that the cancer I have is acinar cell adenocarcinoma. I did have the defective BRCA2 gene. My CA19 level was normal back in Sept. I was told, and confirmed with some research, that acinar cell adenocarcinoma is extremely rare. Only 1% of pancreatic cancer cases. I was wondering if anyone on this forum has had acinar cell adenocarcinoma and would very much like to hear how chemotherapy worked for them. Thank you for your time and any information.

Jump to this post

That is great news! I am starting chemo 3/4 for similar findings. I am going to Moffitt and very interested in clinical trails vs. Folfirinox or the new cocktail that was approved by the FDA this week. I am concerned about quality of life during chemo as I am a widow and right now have no symptoms.
Has anyone else spoken with their oncologist about NALIRIFOX? Or The MRNA Vacine? They all seem to want to stay with the “protocol”.

REPLY
1 reply
ncteacher | @ncteacher | Feb 18 8:36am
In reply to @nbreeze "That is great news! I am starting chemo 3/4 for similar findings. I am going to..." + (show)
@nbreeze

That is great news! I am starting chemo 3/4 for similar findings. I am going to Moffitt and very interested in clinical trails vs. Folfirinox or the new cocktail that was approved by the FDA this week. I am concerned about quality of life during chemo as I am a widow and right now have no symptoms.
Has anyone else spoken with their oncologist about NALIRIFOX? Or The MRNA Vacine? They all seem to want to stay with the “protocol”.

Jump to this post

I can't speak to the vaccine, but I did ask my oncologist last week about Nalirifox. FYI, I'm currently on a reduced dose of Folfiri (no oxaliplatin). My MD does not like the liposomal irinotecan, which he says has many more side effects than the regular irinotecan. He also said the Nalirifox regimen is more expensive than Folfirinox. So we agreed that I'll stay with what I'm doing now. I'm responding well, so I'm fine with that. As I noted elsewhere on this board, it seems like every MD has an opinion about everything when it comes to pancan. And I'm not any sort of medical professional, just a patient. So I would urge you to take these comments with a grain of salt; they could certainly guide you to ask more questions of your MD, but don't necessarily take them as gospel until you discuss them.

REPLY
1 reply
prayers7 | @prayers7 | Feb 18 9:05am
In reply to @marciak9 "Hello there I’m sorry that you’ve got Pancreatic Cancer. Where are you needing treated?" + (show)
@marciak9

Hello there
I’m sorry that you’ve got Pancreatic Cancer. Where are you needing treated?

Jump to this post

Tumor in the pancreas

REPLY
1 reply
marcia | @marciak9 | Feb 18 9:09am

I don’t remember where the thread was about maintance chemo. I asked my dr about it and he said that it hasn’t shown to extend life expectancy. I now have two lesions in my lungs. He says we don’t have to rush into chemo unless I want to. Says it grows slowly so we can watch it over the next few months.

REPLY
nbreeze | @nbreeze | Feb 18 9:12am
In reply to @ncteacher "I can't speak to the vaccine, but I did ask my oncologist last week about Nalirifox...." + (show)
@ncteacher

I can't speak to the vaccine, but I did ask my oncologist last week about Nalirifox. FYI, I'm currently on a reduced dose of Folfiri (no oxaliplatin). My MD does not like the liposomal irinotecan, which he says has many more side effects than the regular irinotecan. He also said the Nalirifox regimen is more expensive than Folfirinox. So we agreed that I'll stay with what I'm doing now. I'm responding well, so I'm fine with that. As I noted elsewhere on this board, it seems like every MD has an opinion about everything when it comes to pancan. And I'm not any sort of medical professional, just a patient. So I would urge you to take these comments with a grain of salt; they could certainly guide you to ask more questions of your MD, but don't necessarily take them as gospel until you discuss them.

Jump to this post

Thank you. 🙏

REPLY
marcia | @marciak9 | Feb 18 9:51am
In reply to @prayers7 "Tumor in the pancreas" + (show)
@prayers7

Tumor in the pancreas

Jump to this post

I meant to say where are you being treated?

REPLY
prayers7 | @prayers7 | Feb 18 3:58pm

Northside Hospital in Atlanta GA

REPLY
markymarkfl | @markymarkfl | Feb 19 11:03pm

For those newly diagnosed, the "questions to ask your oncologist" in these two threads might also be useful:
https://connect.mayoclinic.org/discussion/newly-diagnosed-questions-to-ask/
and
https://connect.mayoclinic.org/discussion/which-questions-should-i-ask-my-surgeon-i-think-whipple-is-likely/
Best wishes to all who have been recently diagnosed. Have hope -- it's not necessarily the death sentence it's so often portrayed as.

REPLY
View MoreView Less
Please sign in or register to post a reply.