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.

marvinjsturing | @marvinjsturing | Aug 1, 2020
In reply to @debsid "I'm sorry. Can you do any studies? Praying for you." + (show)
@debsid

I'm sorry. Can you do any studies? Praying for you.

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@debsid Mayo has contacted me about a study that is at stage 2 of the study. My oncologist told me that means they are done testing on animals and are trying to determine what dosages to use. When they finish stage 2 testing, they will then test the effectiveness of the procedure. The way I understand it, you are given a drug that makes your body hyper sensitive to light. They then use an endoscope to shine a laser on your tumor. The last i heard, this study was on hold due to covid.

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debsid | @debsid | Aug 1, 2020
In reply to @maryvallis512 "Thank you for replying Susan. The waiting to get started is so hard. We have our..." + (show)
@maryvallis512

Thank you for replying Susan. The waiting to get started is so hard. We have our first appt next Wednesday in Rochester. I have such a hard time being hopeful.

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Hi Mary, The waiting is the hardest part. We came to Mayo Phoenix for a second opinion but my hubby got a bleed that landed him in the hospital on the way out of town. We were meant to stay and are so happy with our care team. Praying for you. Debbie

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debsid | @debsid | Aug 1, 2020
In reply to @marvinjsturing "@debsid Last December, I was diagnosed with a recurrence of pancreatic cancer. Last week I received..." + (show)
@marvinjsturing

@debsid Last December, I was diagnosed with a recurrence of pancreatic cancer. Last week I received my official letter from Mayo. My name has been removed from the kidney transplant list. If they can get rid of the cancer (it doesn't look promising at this time) I have to be cancer free for 5 years before I can get back on the list.

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I'm sorry. Can you do any studies? Praying for you.

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1 reply
marvinjsturing | @marvinjsturing | Aug 1, 2020
In reply to @debsid "Boy, you and your family have been through the ringer. Praying a kidney donir if found..." + (show)
@debsid

Boy, you and your family have been through the ringer. Praying a kidney donir if found and it helps the fatigue. We are getting closer to a whipple but it will be a new way of life. How exciting to contemplate years rather than months though. Blessings to you! Believing in healing.

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@debsid Last December, I was diagnosed with a recurrence of pancreatic cancer. Last week I received my official letter from Mayo. My name has been removed from the kidney transplant list. If they can get rid of the cancer (it doesn't look promising at this time) I have to be cancer free for 5 years before I can get back on the list.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 1, 2020

Hello @maryvallis512, I would like to add my welcome to Connect along with @susan2018 and other members. I'm glad to see that you found this discussion and introduced yourself. I understand how such a diagnosis can turn your world upside down. You mentioned you have an upcoming appointment in Rochester. I'm not sure if you have been to the Rochester Mayo Clinic Campus before so thought I would share a few links that you may find helpful.

Map of downtown Rochester Accomodations:
-- http://318commons.com/main/wp-content/uploads/2015/03/Dowtown-subway-and-skyway-map.pdf
Rochester, MN Charitable Lodging
-- https://www.experiencerochestermn.com/mayo-clinic/hotels/charitable-lodging/
Mayo Clinic Patient Video Guides - YouTube Videos: http://bit.ly/2o3jvMj

I thought you might also find the following Sharing Mayo Clinic story uplifting...Aggressive Approach to Pancreatic Cancer Yields Outstanding Outcome: https://sharing.mayoclinic.org/2020/02/05/aggressive-approach-to-pancreatic-cancer-yields-outstanding-outcome/

@maryvallis512 if you can, will you let us know how your appointment on Wednesday goes?

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maryvallis512 | @maryvallis512 | Aug 1, 2020
In reply to @susan2018 "May I ask who your appointments are with?" + (show)
@susan2018

May I ask who your appointments are with?

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Dr. Pearson

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debsid | @debsid | Aug 1, 2020
In reply to @marvinjsturing "Hi, everyone. I was diagnosed with pancreatic cancer on May 9, 2014. My Whipple was performed..." + (show)
@marvinjsturing

Hi, everyone. I was diagnosed with pancreatic cancer on May 9, 2014. My Whipple was performed by Dr. Farnel at Mayo in Rochester on June 5, 2014. The surgery took 8 1/2 hours. The doctor removed most of my pancreas, part of my stomach and my duodenum. What was left of my pancreas was so bad that the doctor didn't even connect it back into my digestive system. I was Staged at 2b because cancer was found in 1 of the 64 lymph nodes that were removed. Surgery was followed by 6 months (18 infusions] of gemcitabine or gemzar. My last treatment was December 30, 2014. I was looking forward to a new year with out any treatments only to discover that I had a very rare reaction to the chemo and developed atypical Hemolytic Uremic Syndrome. I spent the next 10 months going to Mayo for treatment. By the time they got the aHUS under control, my kidney function was down to 15%. In order to be listed on the kidney transplant list, I had to be cancer free for 5 years. That happened last June. My sister had offered to be a donor for me. Two weeks before she was scheduled for her testing, she was diagnosed with mantel cell lymphoma. She has now finished her chemo and is working on getting a stem cell transplant. I am not yet on dialysis. As far as I know, I do not have anyone working on becoming a donor so I am now waiting for a deceased donor. At this time I am grateful just to be alive. The biggest issue I deal with on a daily basis is fatigue. I typically need a nap in the afternoon. Because in essence I have no pancreas I am treated as a Type I diabetic and have to take Creon every time I eat. Other than that, I have a pretty good quality of life. I often tell people that other than diabetes, pancreatic cancer and chronic kidney disease, I am in perfect health!

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Boy, you and your family have been through the ringer. Praying a kidney donir if found and it helps the fatigue. We are getting closer to a whipple but it will be a new way of life. How exciting to contemplate years rather than months though. Blessings to you! Believing in healing.

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1 reply
susan2018 | @susan2018 | Aug 1, 2020
In reply to @maryvallis512 "Dr Pearson" + (show)
@maryvallis512

Dr Pearson

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Same for my husband. Initial evaluation was with his nurse practitioner, then scheduled further. I’ll be thinking of you.

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maryvallis512 | @maryvallis512 | Aug 1, 2020
In reply to @susan2018 "May I ask who your appointments are with?" + (show)
@susan2018

May I ask who your appointments are with?

Jump to this post

Dr Pearson

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1 reply
maryvallis512 | @maryvallis512 | Aug 1, 2020
In reply to @susan2018 "May I ask who your appointments are with?" + (show)
@susan2018

May I ask who your appointments are with?

Jump to this post

So far Dr Pearson. They said they will make more appts as it gets closer.

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