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.

tomdecker1117 | @tomdecker1117 | Jun 26 8:22am

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

gamaryanne | @gamaryanne | Jun 26 8:22am

Medical treatment has come very far in the past few years! Plan for not one, but multiple opinions on your case. Treatment is not “one size fits all”. Get to a Center of Excellence for at least one of your consults. Very very important!!💜.

lisn | @lisn | Jun 26 8:49am

In reply to @asutton0144 "I was diagnosed with Stage 2 Pancreatic Cancer…… my grandfather and an uncle had the same...." + (show)

You will find so much helpful information and support here. My husband was diagnosed last year and we were completely overwhelmed, but I found hope, comfort and answers to so many of my questions. This is a journey we don't want to be on, but we're not alone. 💜

199 | @199 | Jun 26 11:40am

In reply to @asutton0144 "I was diagnosed with Stage 2 Pancreatic Cancer…… my grandfather and an uncle had the same...." + (show)

asutton0144,
Go ahead and have a good cry! It is perfectly understandable that you would want to do that. Get it out of your system. I know I had myself a few when I found out I had pancreatic cancer & then found out it was stage IV not I! Find yourself a good oncologist. Try using Pan Can network too! They have helpful people to talk to & information you will use. It will be 2 years since my diagnosis/prognosis, and I am so thankful for still being here. If you believe in prayer, then ask for that!

gamaryanne | @gamaryanne | Jun 27 5:48am

In reply to @tomdecker1117 "Diagnosed with pancreatic cancer in February and then going through chemo ever since. I’ve been looking..." + (show)

I think you are speaking of Dr Von Hoff. He is a leader in the world of Pcan. He works out of Virginia Piper Cancer institute with another incredible physician, Dr Borazanski. They are located in Scottsdale. I did a consult with them in May.

Colleen Young, Connect Director | @colleenyoung | Jun 27 11:17am

Hi all,
Many of you have been welcomed to the Pancreatic Cancer support group by @marciak9. Check out today's member spotlight by @hopeful33250. Learn more about who inspires Marcia on Mayo Clinic Connect, how she finds balance and why she chooses to lead with love.

- Lead with love: Meet @marciak9 https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/lead-with-love-meet-marciak9/

tomdecker1117 | @tomdecker1117 | Jun 27 12:34pm

In reply to @gamaryanne "I think you are speaking of Dr Von Hoff. He is a leader in the world..." + (show)

Ok yes that’s it. Just wondering how it went. I’m considering making a trip out very soon. Chemo almost over soon. Scans beginning of August. Looking best or other options. Thanks!

marcia | @marciak9 | Jun 27 5:48pm

In reply to @asutton0144 "I was diagnosed with Stage 2 Pancreatic Cancer…… my grandfather and an uncle had the same...." + (show)

I’m sorry you’re going through this. We’re all in it together so feel free to ask questions. I have found a lot of comfort reading about the different approaches we all have.

stageivsurvivor | @stageivsurvivor | Jun 27 9:01pm

In reply to @tomdecker1117 "Diagnosed with pancreatic cancer in February and then going through chemo ever since. I’ve been looking..." + (show)

I think you are referring to Daniel Von Hoff MD of HonorHealth in Phoenix. He is one of the ten most cited authors in scientific cancer publications. He is the pioneer of Gemzar and Gemzar/Abraxane and involved in the Biotech firm TGEN which is collaborating with NCI designated Center of Excellence City Of Hope Comprehensive Cancer Center of Duarte, CA. Dr. Von Hoff is regarded as one of the leading pancreatic cancer specialists in the world.

asutton0144 | @asutton0144 | Jun 27 9:12pm

In reply to @199 "asutton0144, Go ahead and have a good cry! It is perfectly understandable that you would want..." + (show)

Yes…. I DEFINITELY believe in prayer and KNOW GOD got me.

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