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.

suelannon | @suelannon | 5 days ago

In reply to @jerryc131 "@suelannon Damn, woman! That’s awful!! How are you two managing? Is he doing chemo? My husband..." + (show)

@jerryc131 My husband was diagnosed in July 2024. He never did Chemo or received any Treatment. Unfortunately , he had a lot of setbacks with the Surgery but he had been a Diabetic since he was 40 and never took it seriously enough. He had Kidney Cancer 4 years before this Diagnosis and lost a Kidney. He was finally recovering from all of that when he had to have a
double Heart bypass. It took him a long while to get over that Surgery when he all of a sudden started to lose weight which then took us on the path of all of the testing before finally getting
this Diagnosis. I have to say he had a hard 6 months after the surgery but after that we had a good year of being able to go out to dinner with Friends and just really enjoy our Family. He was able to eat anything he wanted and had a good quality of Life.
Just in the last 6 weeks, things changed and he has been on a steady decline since. He has
almost stopped eating completely and lost 17 lbs in the last 3 weeks. Sleeping so much more
and has just lost interest in going out or seeing friends. He definitely perks up whenever our
sons are around.
We went to see the Oncologist yesterday and they have referred him to Hospice Care. They will be here on Monday so I am anxious to be able to get a little more support for both of us.
We have been together since we were 17 years old and Seniors in High School. We will be married 51 years this July.
We have had a good life with a lot of Ups and Downs but thankfully we can laugh about the downs which mostly happened in the first several years of Marriage. I can say that this part of the Journey together is the hardest.

Turkey, Volunteer Mentor | @tomrennie | 5 days ago

In reply to @casey1959 "@suelannon I felt my husband's diagnosis took so long. 9 months. Failed biopsy after biopsy. It's..." + (show)

@casey1959 I suggest don't look back at things like the diagnosis took too long. You can't undo what is done. For me, it was unhealthy. I have learned to live today and just move forward. You can change things moving forward. Moving forward has hope.

casey1959 | @casey1959 | 5 days ago

In reply to @tomrennie "@casey1959 I suggest don't look back at things like the diagnosis took too long. You can't..." + (show)

@tomrennie I have accepted it mostly. Yet is it wrong of me to also be angry? I was then realized Pancreatic Cancer is very hard at times to diagnose.

Turkey, Volunteer Mentor | @tomrennie | 4 days ago

In reply to @casey1959 "@tomrennie I have accepted it mostly. Yet is it wrong of me to also be angry?..." + (show)

@casey1959 Nope, not wrong at all to be angry.

Turkey, Volunteer Mentor | @tomrennie | 2 days ago

In reply to @casey1959 "@tomrennie I have accepted it mostly. Yet is it wrong of me to also be angry?..." + (show)

@casey1959 How are you folks doing today?

Turkey, Volunteer Mentor | @tomrennie | 2 days ago

In reply to @gvk911 "@tomrennie Hi Tom, The liver cancer that I have is "Final Diagnosis Liver Mass Needle Biopsy:..." + (show)

@gvk911

@tomrennie
Hi Tom,

The liver cancer that I have is

"Final Diagnosis
Liver Mass Needle Biopsy:
- Moderately differentiated adenocarcinoma favour metastasis from an upper GI/pancreatobiliary origin
- See micro
Electronically signed by Shaun Arthur Copley Medlicott, MD on 31/03/2026 at 13:07 MDT
Microscopic Description
Excellent sampling of liver has captured gland forming adenocarcinoma with goblet cell and signet ring cell morphology effacing portions of otherwise relatively normal liver parenchyma. The presence of goblet cells may correlate with intestinal differentiation of the tumour. However, morphology of carcinoma is relatively generic.

Given the presence of a new pancreatic mass causing duct stricture and a tumour immunophenotype refuting prostate and colon primary origins, a pancreaticobiliary/upper GI tumour derivation is the preferred diagnostic scenario.

It should be noted that histology data, in isolation, cannot exclude other primary tumour sites such as lung, salivary gland/breast neoplasia."

The pancreatic cancer that I have is

"Clinical Information
2cm solid mass in pancreas body with distal duct dilation; also multiple liver lesions.
Pancreatic mass
Final Diagnosis
A. Pancreatic biopsies:
- Adenocarcinoma consistent with pancreatic ductal adenocarcinoma."

I do not know what all this means but my oncologist told me that the liver has pancreatic markers. Right now, I do not have plumbing issues, however, I also have prostate cancer.

The chemo that I am taking are Gemcitabine and Paclitaxel NAB. Starting April 21 the treatments are every week for three weeks and then one week off and then it repeats.

After some reading, I did realize that most pancreatic cancers are found late and therefore they are at stage IV.

I will find out whether the tumour shrinks and see what happens.

I have a CT scan tomorrow. This will be for a baseline.

One of my nephews sent me a couple of links on other treatments, but I am not sure of them. My daughter suggested that I get a second opinion. I will call my GP next week.

Take care,
Glenn

Jump to this post

@gvk911 How are things going for you?

golfgirl1 | @golfgirl1 | 12 hours ago

Hi my name is Mary. Most important, God Bless you all and thanks for any feedback, thoughts, encouragement to come 🙂
My partner Lynne was diagnosed with PC July 2025. The tumor was local (@ 3.0 cm), no metastasis then or now (latest PET in 3/26 showed no spread). Could not have surgery immediately due to arterial involvement/proximity. She had 7 Fulfurinox treatments July - Nov 2025. Then targeted MRI radiation (5 days). Consultation with surgeon at Miami Cancer Center (Dr. Asbun). Tumor shrunk somewhat, but Unfortunately determined not enough for surgery to move forward now. So currently in 2nd round of fulfurinox (5 treatments). Early June will have scan and reassess.
Live in Southeast Florida/Boca Raton
Wondering if we're doing the right thing, seems to be right at this point, but hearing a lot about new trials and treatments (MRNA, KRAS, Optune Pak, etc); gets ones head spinning. Often struggle with whether to move to Mayo, Sloan, or Dana Farber at some point (we have Boston/MA roots.)
Thoughts/feedback welcome, thanks again!
Mary

Turkey, Volunteer Mentor | @tomrennie | 7 hours ago

In reply to @golfgirl1 "Hi my name is Mary. Most important, God Bless you all and thanks for any feedback,..." + (show)

@golfgirl1 Hi Mary and welcome to Mayo Connect. Sorry to hear about the diagnosis and journey of your partner. If you have any doubt about your treatment, get a 2nd opinion. The worst thing that can happen is the confirmation of your current treatment plan. The peace of mind in knowing that you are on the best treatment path is worth it. Here is a link to get the process going at Mayo if you are interested. http://mayocl.in/1mtmR63
How are you folks doing overall? Any questions or concerns going unanswered at this point?

casey1959 | @casey1959 | 7 hours ago

Has anyone with Pancreatic Cancer had the Whipple & not take Creon? Husband's not having any digestive issues. Regular stools currently. To be honest we can't afford Creon nor it's generic. Have a follow up with surgeon in a few days. Was discharged on 4/19. Will discuss a manufacturers coupon we were told. Feel even that won't help much. We will ask if he's not having digestive issues are enzymes necessary.
No such thing as an OTC enzyme🤔

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