Pancreatic Cancer Group: Introduce yourself and connect with others

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.

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

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Profile picture for gvk911 @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

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@gvk911 How are things going for you?

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Profile picture for casey1959 @casey1959

@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.

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@casey1959 How are you folks doing today?

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Profile picture for casey1959 @casey1959

@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.

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

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@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.

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@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.

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Profile picture for casey1959 @casey1959

@suelannon I felt my husband's diagnosis took so long. 9 months. Failed biopsy after biopsy. It's so difficult to watch this illness do what it does to our loved ones. At times I'm just speechless. I feel for you both.

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@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.

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Profile picture for jerryc131 @jerryc131

@suelannon
Damn, woman! That’s awful!! How are you two managing? Is he doing chemo? My husband is having his surgery at UVA. It’s supposed to be pretty good.
I’ll be praying for you two.
🤗

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@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.

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Profile picture for suelannon @suelannon

@jerryc131 My husband had lost a ton of weight and not much of any appetite. We went through 6 months of testing and " Let's wait and see" only to be finally told by the Oncologist that she did not think this was Cancer. We switched hospitals ( Both of these are well known
Hospitals in Phila. ) and went to see a Doctor that specializes in Pancreatic Surgery. He did a Distal Pancreatectomy on my Husband. Tumor was in both body and tail of the Pancreas and in 14 of the 20 Lymph Nodes they removed. There were also masses in his lungs but they could not biopsy for 6 Months because he was too weak from the Surgery. Biopsy finally was done and confirmed for Pancreatic Cancer in the Lungs. He was already Stage 4 .

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@suelannon
Damn, woman! That’s awful!! How are you two managing? Is he doing chemo? My husband is having his surgery at UVA. It’s supposed to be pretty good.
I’ll be praying for you two.
🤗

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Profile picture for suelannon @suelannon

@jerryc131 My husband had lost a ton of weight and not much of any appetite. We went through 6 months of testing and " Let's wait and see" only to be finally told by the Oncologist that she did not think this was Cancer. We switched hospitals ( Both of these are well known
Hospitals in Phila. ) and went to see a Doctor that specializes in Pancreatic Surgery. He did a Distal Pancreatectomy on my Husband. Tumor was in both body and tail of the Pancreas and in 14 of the 20 Lymph Nodes they removed. There were also masses in his lungs but they could not biopsy for 6 Months because he was too weak from the Surgery. Biopsy finally was done and confirmed for Pancreatic Cancer in the Lungs. He was already Stage 4 .

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@suelannon I felt my husband's diagnosis took so long. 9 months. Failed biopsy after biopsy. It's so difficult to watch this illness do what it does to our loved ones. At times I'm just speechless. I feel for you both.

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@casey1959 Some of the nicest people that I have ever met provided me with care. Little things like a cup of coffee, a fresh hot blanket when I am freezing, comforting me when I am terrified, telling me it's ok after I vomited on them, and many other things. I feel very fortunate.

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@tomrennie we never forget these little things. Makes the tough big things a bit easier to get through. We've had many nurses these last 5days here in the Critical care Step Down unit. Something about that certain nurse one gets care from that just makes things breathable. Can't explain it. Good night everyone. Rest easy.

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