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 Henry and I was diagnosed with Stage 4 pancreatic cancer the day after Thanksgiving last year. Surgery is not indicated for me due to the placement of the tumor and its expansion into connected blood vessels. So I underwent chemo for 11 sessions before I had to quit, and amazingly there was no further growth in the tumor. I'm currently on a "chemo holiday" for 3 months. After that period, I'll get another scan to see what options might be available.

I'm uncertain about the future and wonder how the disease will progress. I'm, fortunate to have a great group of family and friends that are a constant support.

Thank you for letting me join!

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@debleigl

An update on my story. My dear Tom succumbed to the cancer on April 20, 2023. He never recovered from the botched whipple procedure. There was a bad connection (a crimp) and he literally starved to death. I hope your situation is more positive.

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@debleigl

Please accept my condolences on the loss of Tom. How very difficult for you. I would encourage you to post on Connect's Grief/Loss Support Group. Here is a link to those discussions,
-Loss/Grief
https://connect.mayoclinic.org/group/loss-grief/
You can use these discussion groups to post about Tom, feel free to post about who he was to you and how you miss him. There is great healing in sharing memories after someone has passed away.

Does this sound like something you could try?

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@debleigl

An update on my story. My dear Tom succumbed to the cancer on April 20, 2023. He never recovered from the botched whipple procedure. There was a bad connection (a crimp) and he literally starved to death. I hope your situation is more positive.

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I am so very sorry for your loss and the tragic way it happened. God Bless you and your family.

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Hello, i had nodular melanoma and post surgery doctors suggested immunotherapy. A catscan found my main pancreas duct was enlarged too 1cm. I was diagnosed with IPMN and because of Opdivo infusions to keep melanoma fron returning, it was decided we would monitor the pancreas with scans. Last month I was diagnosed with early stage less than 1 cm invasive adenocarcinoma of the distal body of pancreas. In one week I will see a medical oncologist for four months of neoadjuvant chemotherapy, complete pancreatectomy, then two more months of chemotherapy.

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Again, this disease, based on the mutations you carry, “is the hardest cancer to cure” according to my medical oncologist. What most of us get is extension of life through chemo or surgery or radiation. My dad did pass 25 years ago due to a misdiagnosis (food poisoning) and so it spread to his stomach and everywhere else and could no longer take anything but Ensure and lost most of that daily. He lived 8 months, but he did pass on to me his strength and integrity during that time and so I continue my fight.

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@debleigl

An update on my story. My dear Tom succumbed to the cancer on April 20, 2023. He never recovered from the botched whipple procedure. There was a bad connection (a crimp) and he literally starved to death. I hope your situation is more positive.

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Hello Degleigl,
Were you previously under thread of @tomdecker1117? I’m so very sorry to hear of your loss. Sounds like a stent should have been put in early on. My bestie since high school passed from gall bladder cancer in November 2022 for the same reason. Her dr at Kaiser in San Diego put in a plastic stent in her intestine sometime after her surgery but somehow there was no follow through ultrasound endoscopy after 6 weeks and tissue had grown inside the stent when a metal stent MIGHT have prevented that so she also passed from starvation. I had just undergone pancreatic surgery so I wasn’t able to even visit her in the hospital but her family indicated it was difficult for them not to be able to help her at that stage. Thank you for sharing about your loved one and so very sorry for you. The fact that you posted on this thread shows that he had a great support system from you. Again, will be adding you and Tom to todays prayers.

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@lovingwifeterry

Hello Deb. I am so sorry for yo both. We are getting ready to contact the Mayo clinic Or MD Anderson for a second opinion for treatment. They finally decided it is bile duct not pancreas cancer. Last chemo was 6- 8 weeks ago and he has had one medical problem after another. and very weak. Hopefully will be able to start Jan 14th with a new treatment. We shall see. Really looking forward to a second team looking at what treatment will be best for him. We live in a small town and feel we need the best to let us know what is going on and the best treatment for him. Wishing the best to both of you. Please let us know how you are doing with Tom's treatment.

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An update on my story. My dear Tom succumbed to the cancer on April 20, 2023. He never recovered from the botched whipple procedure. There was a bad connection (a crimp) and he literally starved to death. I hope your situation is more positive.

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@tomdecker1117

Diagnosed with pancreatic cancer in February and then going through chemo ever since. I’ve been looking for options and hearing about a doctor Hopf At the hospital in Arizona involving clinical trials and such. I live in Florida and I’ve been being treated at Mayo in Jacksonville Does anybody have any insight about this doctor or clinical trials in Arizona? Thanks

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@tomdecker1117, I might also add Mayo Clinic's Clinical Trial website. https://www.mayo.edu/research/clinical-trials

You can search for clinical trials for pancreatic cancer using the search tool on the site. But I think you might appreciate speaking with a cancer trial coordinator. Here's how:

CANCER-RELATED CLINICAL STUDIES QUESTIONS
Phone: 855-776-0015 (toll-free)
Online form: https://www.mayo.edu/research/forms/cancer-clinical-trials

What chemotherapy are you currently on, Tom? What stage is your pancreatic cancer?

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In reply to @tharani1960 "This in medicine" + (show)
@tharani1960

This in medicine

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@tharani1960, I think you may have tried to upload a file or image. Perhaps you can simply type the name of the medicine in a message.

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@hopeful33250

Hello @tharani1960 and welcome to Mayo Connect. I'm so glad that you found this forum where others can share their experiences with you. In your post you say that you have completed eight chemo cycles and six cycles of a tablet. Do you know the names of these medications?

I look forward to hearing from you again. How long ago were you diagnosed with pancreatic cancer? Will you be having any follow-up scans in the near future?

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This in medicine

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