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.

kjrita | @kjrita | Apr 13, 2020

Hello, I just received an email from PanCan that mentioned there are some webinars setup for "Navigating Pancreatic Cancer Care During the Coronavirus Crisis" Not sure if I am supposed to do this, but thought others may benefit.

Tuesday, April 14, 2020 • 2 – 3 p.m. PDT

Please note time zone differences:
3 – 4 p.m. MDT
4 – 5 p.m. CDT
5 – 6 p.m. EDT

After registering, you will receive a confirmation email containing a link to join the webinar. The email will also include instructions for the audio portion of the webinar:
https://www.pancan.org/facing-pancreatic-cancer/patient-services/educational-events/

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mayojoe7 | @mayojoe7 | Apr 8, 2020
In reply to @colleenyoung "@mayojoe7, will your first consult be by phone or in person? If in person, @marvinjsturing can..." + (show)
@colleenyoung

@mayojoe7, will your first consult be by phone or in person? If in person, @marvinjsturing can help you know what you can expect about Mayo Clinic Rochester with COVID-19 protocols in place. He was just there, or even still, is for radiation treatments. Unfortunately, I just found out the Cancer Education Center in the Gonda building is closed. It's a great place to get information and to relax between appointments.

Joe: Do you have a list of questions ready for Dr. Mahipal? Anything you'd like to ask Connect members as you prepare for your appointment?

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Hello-we will be meeting with Dr. Mahipal in person tomorrow. My wife and I are very glad to get the process moving. I have several questions prepared-mostly about the plan, chemo timing & frequency, what to expect, etc. We live in the Twin Cities so I could potentially have chemo treatment at Mayo-that is currently the plan. I believe I will most likely have Fofirinox or a combination of Gemcitabine/Abraxane. When I had hodgkins chemo, I had a groshong catheter placed which made chemo intake less painful. May not be necessary for this chemo treatment. So, I have questions like that. I will also be asking about other treatment option down the road, i.e. radiation, whipple procedure, immunotherapy considerations, clinical trial options, etc. Lots to talk about but we are very glad to be getting started. If there is anything that jumps out to folks we should ask I would certainly welcome the advice. Joe

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 7, 2020
In reply to @buckslayer "My husband and I were at Mayo Rochester today for final tests in anticipation of his..." + (show)
@buckslayer

My husband and I were at Mayo Rochester today for final tests in anticipation of his Whipple procedure with Dr. Truty tomorrow. It was like a ghost town but we felt very safe from the virus with the screening checkpoints they had at every entrance, and most people we did see were wearing masks. It was amazing getting a parking spot up close - very few cars in the ramp and few people in the waiting rooms. We are very thankful to be able to continue my husband's course of treatment given all the surgeries that were cancelled lately. We are looking forward to him being cured after a very long year of chemo and radiation!

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Thanks for stepping in and painting a picture for @mayojoe7 of what Mayo Clinic is like these days.

Sleep well, @fassbinder and all the best for tomorrow. I look forward to hearing from you, while you wait and need to talk or when you have news.

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buckslayer | @buckslayer | Apr 7, 2020

My husband and I were at Mayo Rochester today for final tests in anticipation of his Whipple procedure with Dr. Truty tomorrow. It was like a ghost town but we felt very safe from the virus with the screening checkpoints they had at every entrance, and most people we did see were wearing masks. It was amazing getting a parking spot up close - very few cars in the ramp and few people in the waiting rooms. We are very thankful to be able to continue my husband's course of treatment given all the surgeries that were cancelled lately. We are looking forward to him being cured after a very long year of chemo and radiation!

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 7, 2020
In reply to @mayojoe7 "Hi-we just learned we have a consult this Thursday at Mayo Rochester with Dr. Amit Mahipal..." + (show)
@mayojoe7

Hi-we just learned we have a consult this Thursday at Mayo Rochester with Dr. Amit Mahipal and should learn much more then about the plan. We are ready to get started for sure. Thank you for this site, I've already found it to be helpful.

Jump to this post

@mayojoe7, will your first consult be by phone or in person? If in person, @marvinjsturing can help you know what you can expect about Mayo Clinic Rochester with COVID-19 protocols in place. He was just there, or even still, is for radiation treatments. Unfortunately, I just found out the Cancer Education Center in the Gonda building is closed. It's a great place to get information and to relax between appointments.

Joe: Do you have a list of questions ready for Dr. Mahipal? Anything you'd like to ask Connect members as you prepare for your appointment?

REPLY
1 reply
mayojoe7 | @mayojoe7 | Apr 7, 2020
In reply to @kjrita "@mayojoe7 It sounds like you are a very strong person indeed. I was diagnosed with pancreatic..." + (show)
@kjrita

@mayojoe7 It sounds like you are a very strong person indeed. I was diagnosed with pancreatic cancer 3/1/18. I went for a second opinion at Mayo and ended up working with Dr. Truty. The Mayo teams are the best! I pray that God will direct your path to the correct doctor and course of action. You know about one day at a time and I believe you know exactly what to do. I pray for peace and protection for you. If you need some encouragement, my story is out there for that purpose. 🙌🏻 Rita https://sharing.mayoclinic.org/2020/02/05/aggressive-approach-to-pancreatic-cancer-yields-outstanding-outcome/

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Hello Rita-thank you for your reply. I just read your story and it certainly is inspiring. I'm so glad to read how well you are doing. I see you live in Lino Lakes. We live in the Plymouth/Maple Grove area. Anyway, thanks for sharing and may God continue to protect you. Joe

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mayojoe7 | @mayojoe7 | Apr 7, 2020
In reply to @colleenyoung "I add my welcome, @mayojoe7. You certainly are no stranger to cancer. When is your next..." + (show)
@colleenyoung

I add my welcome, @mayojoe7. You certainly are no stranger to cancer. When is your next consult to find out the treatment plan for pancreatic cancer?

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Hi-we just learned we have a consult this Thursday at Mayo Rochester with Dr. Amit Mahipal and should learn much more then about the plan. We are ready to get started for sure. Thank you for this site, I've already found it to be helpful.

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1 reply
mayojoe7 | @mayojoe7 | Apr 7, 2020
In reply to @jeanne5009 "Very best of luck to you. My friend is scheduled to have the Whipple procedure done..." + (show)
@jeanne5009

Very best of luck to you. My friend is scheduled to have the Whipple procedure done very soon. He has a fast growing cyst on the head of the pancreas with inflammation. Hopefully that is as far as it will go. I will be posting as we proceed and will be watching your progress with Mayo.

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Thank you-we are ready to get started. I hope all goes well with your friend's Whipple procedure. Blessings to you.

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kjrita | @kjrita | Apr 6, 2020
In reply to @mayojoe7 "Hello, I just joined this forum. I was diagnosed with Pancreatic Cancer by Mayo on Mar..." + (show)
@mayojoe7

Hello, I just joined this forum. I was diagnosed with Pancreatic Cancer by Mayo on Mar 31st last week following Endoscopic US, then had CT this past Friday. Report shows there are metastatic lesions on my liver, spleen, duodenum and pancreatic head. We believe we will be told it is stage 4 since it has metastasized to the liver. I am no stranger to cancer, had Hodgkin's stage 3b with chemo and radiation in 1993 while in college. The treatment cured me and I have been able to live a blessed and wonderful life. Unfortunately, the radiation that saved my life due to Hodgkin's created new challenges down the road. In 2016, due to tissue deterioration caused by the radiation, I had my Mitral and Aortic valves replaced at Mayo Clinic Rochester. During that time Mayo also discovered a mass on my left Adrenal gland called a Pheochromocytoma. Apparently very rare condition and can be very dangerous. Had the Pheo removed in Jan 2016, then the valve replacement surgery in March 2016. I've been doing great following those surgeries until now with the Pancreatic Cancer diagnosis. I'm 48 years old and my family and I are ready to fight this with everything we have. I am so thankful for Mayo and have seen 1st hand what they can do. We're anxious to learn our treatment path. I've done some initial reading and we are hopeful I can become a surgical candidate eventually with Dr. Truty or one of the other surgeons at Mayo for the Whipple procedure. I will try to revisit once we learn more about our treatment path. God Bless you all, Joe

Jump to this post

@mayojoe7 It sounds like you are a very strong person indeed. I was diagnosed with pancreatic cancer 3/1/18. I went for a second opinion at Mayo and ended up working with Dr. Truty. The Mayo teams are the best! I pray that God will direct your path to the correct doctor and course of action. You know about one day at a time and I believe you know exactly what to do. I pray for peace and protection for you. If you need some encouragement, my story is out there for that purpose. 🙌🏻 Rita https://sharing.mayoclinic.org/2020/02/05/aggressive-approach-to-pancreatic-cancer-yields-outstanding-outcome/

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