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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 19, 2020
In reply to @marty1996 "Can i ask a question, I have developed Cronic pacreatictis due to atrophy of my pancreas..." + (show)
@marty1996

Can i ask a question, I have developed Cronic pacreatictis due to atrophy of my pancreas believed to be related my alpha 1 difficiency an autoamune difficiency. My pancreas appears to be no longer producing the insulin needed to support my diabetic needs ( 20+yrs ) diabetic. I'm sorry but my question is has anyone developed pancreatic cancer as result of pancreatic atrophy with resulted in Cronic pacreatictis. Thank you for you support Allie.

Jump to this post

Hello @marty1996

On Mayo Clinic's website, I found some information on Alpha 1 deficiency, however, it does address problems of the pancreas, but of the liver. I see that you have already posted on the Connect discussion on Alpha 1 deficiency. I hope that someone else may be able to answer your question about the pancreas problem.
https://www.mayoclinic.org/medical-professionals/pulmonary-medicine/news/alpha-1-antitrypsin-deficiency-a-liver-lung-connection/mac-20429381

REPLY
marty1996 | @marty1996 | Mar 18, 2020

Can i ask a question, I have developed Cronic pacreatictis due to atrophy of my pancreas believed to be related my alpha 1 difficiency an autoamune difficiency. My pancreas appears to be no longer producing the insulin needed to support my diabetic needs ( 20+yrs ) diabetic. I'm sorry but my question is has anyone developed pancreatic cancer as result of pancreatic atrophy with resulted in Cronic pacreatictis. Thank you for you support Allie.

REPLY
1 reply
marvinjsturing | @marvinjsturing | Mar 18, 2020
In reply to @buckslayer "My husband had the same treatment, finished about two weeks ago. He also had kidney issues..." + (show)
@buckslayer

My husband had the same treatment, finished about two weeks ago. He also had kidney issues so couldn't take the chemo pill, but they did have him do the chemo drug through a pump he wore every day for the three weeks. Apparently this is less stress on the kidney than the chemo pills are. Good luck to you!

Jump to this post

@fassbinder Was your husband on dialysis already? I am not (yet). Doctors told me if I was on dialysis it would be possible to get chemo.

REPLY
1 reply
buckslayer | @buckslayer | Mar 18, 2020
In reply to @marvinjsturing "I just received a call from my radiologist. My treatments start tomorrow (Thursday, March 19). I..." + (show)
@marvinjsturing

I just received a call from my radiologist. My treatments start tomorrow (Thursday, March 19). I will be receiving radiation 5 days a week. They currently have me scheduled for 28 treatments (through April 22). I am praying for as little damage as possible to the intestines and the kidneys. If there is too much damage to the kidneys, I may have to start dialysis.  I am also praying that I will be able to handle the side effects of radiation (fatigue, skin irritation, nausea and diarrhea). Typically, they give an oral version of folfirinox to make the radiation more effective. Because of my kidney problems, I can't have the chemo.

Jump to this post

My husband had the same treatment, finished about two weeks ago. He also had kidney issues so couldn't take the chemo pill, but they did have him do the chemo drug through a pump he wore every day for the three weeks. Apparently this is less stress on the kidney than the chemo pills are. Good luck to you!

REPLY
1 reply
kjrita | @kjrita | Mar 18, 2020
In reply to @marvinjsturing "I just received a call from my radiologist. My treatments start tomorrow (Thursday, March 19). I..." + (show)
@marvinjsturing

I just received a call from my radiologist. My treatments start tomorrow (Thursday, March 19). I will be receiving radiation 5 days a week. They currently have me scheduled for 28 treatments (through April 22). I am praying for as little damage as possible to the intestines and the kidneys. If there is too much damage to the kidneys, I may have to start dialysis.  I am also praying that I will be able to handle the side effects of radiation (fatigue, skin irritation, nausea and diarrhea). Typically, they give an oral version of folfirinox to make the radiation more effective. Because of my kidney problems, I can't have the chemo.

Jump to this post

Keep the faith. One day at a time. I will be praying.

REPLY
lml | @lml | Mar 18, 2020
In reply to @marvinjsturing "I just received a call from my radiologist. My treatments start tomorrow (Thursday, March 19). I..." + (show)
@marvinjsturing

I just received a call from my radiologist. My treatments start tomorrow (Thursday, March 19). I will be receiving radiation 5 days a week. They currently have me scheduled for 28 treatments (through April 22). I am praying for as little damage as possible to the intestines and the kidneys. If there is too much damage to the kidneys, I may have to start dialysis.  I am also praying that I will be able to handle the side effects of radiation (fatigue, skin irritation, nausea and diarrhea). Typically, they give an oral version of folfirinox to make the radiation more effective. Because of my kidney problems, I can't have the chemo.

Jump to this post

I’ve so appreciated your posts and wish you the very best possible outcomes.

REPLY
marvinjsturing | @marvinjsturing | Mar 18, 2020

I just received a call from my radiologist. My treatments start tomorrow (Thursday, March 19). I will be receiving radiation 5 days a week. They currently have me scheduled for 28 treatments (through April 22). I am praying for as little damage as possible to the intestines and the kidneys. If there is too much damage to the kidneys, I may have to start dialysis.  I am also praying that I will be able to handle the side effects of radiation (fatigue, skin irritation, nausea and diarrhea). Typically, they give an oral version of folfirinox to make the radiation more effective. Because of my kidney problems, I can't have the chemo.

REPLY
4 replies
kjrita | @kjrita | Mar 17, 2020

Hello, I somehow missed the initial introductions. I was diagnosed with Pancreatic Cancer 3/1/2018 and have had a miraculous recovery and outcome. It's easier to share my story on the Mayo blog than restate the details. I believe focusing on one day at a time, staying positive, trusting my faith and walking through the steps recommended by my surgeon caused me to have my miraculous outcome of being cancer-free. Here is my story on the Sharing Mayo Blog: https://sharing.mayoclinic.org/2020/02/05/aggressive-approach-to-pancreatic-cancer-yields-outstanding-outcome/

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 4, 2020
In reply to @marvinjsturing "Results from the biopsy have come in. My pancreatic cancer has come back. Now I need..." + (show)
@marvinjsturing

Results from the biopsy have come in. My pancreatic cancer has come back. Now I need to meet wit a radiologist to set up a treatment plan.

Jump to this post

I hope your radiologist appointment brings you some helpful news, @marvinjsturing. I look forward to hearing from you after you get your plan of treatment.

REPLY
colorado19 | @colorafo19 | Mar 3, 2020

I agree 100%. My husband would not be here today if it wasn’t for our second opinion at Mayo in Rochester!!

REPLY
View MoreView Less
Please sign in or register to post a reply.