Pancreatic Cancer Group: Introduce yourself and connect with others

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

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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@colleenyoung

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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@colleenyoung Hi, Colleen. You are correct, no treatments on weekends.I have 2 treatments done and will continue on Monday. I will be meeting with the radiologist every Tuesday during treatment. Our son came over today and installed a streaming device on our TV. There are many free streaming services and we are thinking about getting Amazon Prime. We got our smoker out today. Our son brought leg of lamb, chicken breast, pork roast and we had pork loin. Going to be eating good for a few days. Church will be video streaming again this week. Only going out for groceries (I drive and stay in the car; my wife goes in to shop), doctor's appointments and to pick up meds.

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Greetings,
My name is Joanne, I was diagnosed with Stage 3 Pancreatic Cancer in May 2015. I had the whipple surgery, 20 lymph nodes removed and 28 rounds of radiatio. I was cancer free for 1 year then the cancer returned in another area. I've been on chemo in one form or another for 4 years. My journey has been challenging but between my God, my Surgeon and my Oncologist team I am still here.

Currently, I'm on a 3000 milligram of Capecitabine 7 days on and 7 off. I get quarterly scans and MRI's. I still work and have a normal life.

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