Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young @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?

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

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@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.

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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.

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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/

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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.

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@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.

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

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@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.

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

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@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.

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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!

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@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!

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@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.

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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.

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@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.

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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

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@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.

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@marvinjsturing Hello, Marvin,
I so appreciate the update. I will pray with you for those issues you mentioned. Wishing you all the best during this time!

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@marvinjsturing

@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.

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Hi @marvinjsturing I’m thinking about you today. I believe you are not getting radiation on the weekend. How are you spending your time? Will treatments continue next week?

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