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.

mary1957 | @mary1957 | Mar 10, 2023

Hello, my husband has been recently been diagnosed with pancreatic cancer stage 11b.
He has started chemo last week,5 hr. IV,then sent home with a pump for 46 hrs. His regiment is ( fluorouracil, irinotecan,leucovorin,oxaliplatin.
Very scared, hoping this chemo work. His C19 blood work was at 2200, before treatment.
5 more treatments to go to see if they can operate.

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2 replies
salterd | @salterd | Mar 9, 2023

It is not Whipple surgery. I honestly don't know exactly what Dr. Truty calls the surgery except for the fact that both the stomach and pancreas are 100% removed.

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1 reply
mayoconnectuser1 | @mayoconnectuser1 | Mar 9, 2023
In reply to @salterd "My husband was diagnosed with pancreatic cancer September 28, 2022. He has completed 10 chemo treatments..." + (show)
@salterd

My husband was diagnosed with pancreatic cancer September 28, 2022. He has completed 10 chemo treatments and goal is to get to 12 and then 3 weeks of radiation. There is a chance that he will have to have surgery. The surgery is a very intense surgery which involves removing the entire stomach and pancreas because the tumor is wrapped. Does anyone in this group know of anyone that has had this surgery that we could talk to?

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salter,

Are you referring a Whipple surgery?

What stage is his cancer?

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salterd | @salterd | Mar 9, 2023

My husband was diagnosed with pancreatic cancer September 28, 2022. He has completed 10 chemo treatments and goal is to get to 12 and then 3 weeks of radiation. There is a chance that he will have to have surgery. The surgery is a very intense surgery which involves removing the entire stomach and pancreas because the tumor is wrapped. Does anyone in this group know of anyone that has had this surgery that we could talk to?

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1 reply
gardenlady1116 | @gardenlady1116 | Mar 8, 2023

Hard to get answers like that. My doctor has a lot of compassion but also told me he would not sugar coat anything.

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soupson | @soupson | Mar 7, 2023

Diagnosed Feb 25 stage IV. With treatment 12-14 mos. Struggling with chemo trying find how much quality time I have without treatment. Can’t find the crystal ball
Bruce

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1 reply
stephenkogler | @stephenkogler | Mar 1, 2023
In reply to @mdbray "I’m feeling well, except for a little discomfort on my right side under my rib. I..." + (show)
@mdbray

I’m feeling well, except for a little discomfort on my right side under my rib. I walk a mile every day that weather permits and take Creon before I eat a meal.
My surgeon said that my pancreatic cancer was carcinomatosis and that chemo would only give me about four more months ( he said I had about six to eight months). The PET scan and CT scans did not show the carcinomatosis. He found it when he went in to do the Whipple. He didn’t do the Whipple and left the tumor. He took six inches of my intestine and did a bypass around the pancreas so I would be able to digest food. Chemo made me sick and I don’t want to feel miserable if it’s not going to help me.
I feel sad when I think of what has happened to me and my family—it’s seems surreal that I feel normal, but knowing that my time is near. I am in God’s hands and pray for a miracle 🙏

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MD Bray,
It is overwhelming when I think about what I will miss. I am finishing my # 8 chemo now for another 30 hours. There are so many stories of things that survivors have done in stage 4 pancreatic. I was intrigued by the extreme fasting because I was an intermittent faster prior to my diagnosis and the Joe Tippens story was amazing and the work being done with immunotherapy. I often wonder if there is a cure. I have found four survivors in my town and one was stage 4. He is now 10 years. I will keep you in my healing thoughts.

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mayoconnectuser1 | @mayoconnectuser1 | Feb 28, 2023
In reply to @maedanosetchan "The doctor here says somewhere between 1 and 3. Listening to the other people here and..." + (show)
@maedanosetchan

The doctor here says somewhere between 1 and 3. Listening to the other people here and my personal friend and other sources and factors, I decided to go to MD Anderson. I will ask them to operate on me, not just give a second opinion.

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mae,

A center of excellence should be able to quickly stage your disease, and will, likely prescribe neoadjuvant CHT/CRT, prior to surgery.

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gardenlady1116 | @gardenlady1116 | Feb 27, 2023

Your courage is a miracle. Thank you for sharing your very difficult story. I hope you will continue to feel normal and live each day well.

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sprinter345 | @sprinter345 | Feb 27, 2023

I am glad you are feeling well after all you have been through.
It would be even harder on you and your family if you were suffering. I never stop praying for more good time while they find more ways to combat this disease. The current reality is always in our minds. God Bless.

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