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?

@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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Hi my name is Marlene
My dear cousin was diagnosed with stage 4.
Just wondering if everyone was aware John Hopkins University has a vacine and surgical procedures that sound promising

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@survivor2

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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That's wonderful, I'm so happy for you. He doesn't want surgery, unsure why. I pray you and everyone beats this horrible monster.I'll keep you in my prayers. God Bless

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@survivor2

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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Hi Joann @survivor2 ane Marlene @sunshine041594 welcome to Mayo Clinic Connect and the Pancreatic Cancer support group.

@survivor2 I bet @marvinjsturing would like to connect with you. He just recently found out that his pancreatic cancer has returned and is now getting radiation treatments. Joann, you must be tolerating Capecitabine well if you're able to continue to work and normal life (although nothing is normal right now). What is your work? Are you able to work from home?

@sunshine041594 is your cousin being treated at Johns Hopkins? How is he doing?

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@colleenyoung

Hi Joann @survivor2 ane Marlene @sunshine041594 welcome to Mayo Clinic Connect and the Pancreatic Cancer support group.

@survivor2 I bet @marvinjsturing would like to connect with you. He just recently found out that his pancreatic cancer has returned and is now getting radiation treatments. Joann, you must be tolerating Capecitabine well if you're able to continue to work and normal life (although nothing is normal right now). What is your work? Are you able to work from home?

@sunshine041594 is your cousin being treated at Johns Hopkins? How is he doing?

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My husbands pancreatic cancer has returned, he is currently undergoing chemo and radiation is being recommended, I would like to connect with anyone in the same boat.
Thank you.

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@marvinjsturing

@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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Hi, my husband was diagnosed with pancreatic cancer Jan 2017, did chemo, had Whipple May 2017, followed by more chemo. Had been NED until Jan 2020 when we found out the cancer has returned. He is on chemo and radiation is being recommended. I would like to know others experiences with radiation and types of chemo. He is scheduled for a endoscopy tomorrow, partially to put in some “gold beads” as markers for the radiation. Has anyone else had this? With COVID I don’t want him to have the procedure if it’s not absolutely necessary.

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@baileycody

Hi, my husband was diagnosed with pancreatic cancer Jan 2017, did chemo, had Whipple May 2017, followed by more chemo. Had been NED until Jan 2020 when we found out the cancer has returned. He is on chemo and radiation is being recommended. I would like to know others experiences with radiation and types of chemo. He is scheduled for a endoscopy tomorrow, partially to put in some “gold beads” as markers for the radiation. Has anyone else had this? With COVID I don’t want him to have the procedure if it’s not absolutely necessary.

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Hi, my mom has a closer recurrence than your husband (Whipple 09/2019) but very similar situation. She's now doing radiation while she's been on chemo (took about 4 weeks off for radiation). She didn't need to have "gold beads" put in place (I know they are used to pinpoint the location but it might depend on what type of radiation is being used). My mom had a 4D CT scan to mark her and everything was done externally and very easily. Did you ask about options for the radiation that might not need a procedure done? It might be necessary in your husband's case, but like I said my mom didn't need to have anything like that done. Best of luck to you both…there is nothing easy about this cancer and now with the COVID-19 situation it only adds to our worries and concerns.

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@thally5299

Hi, my mom has a closer recurrence than your husband (Whipple 09/2019) but very similar situation. She's now doing radiation while she's been on chemo (took about 4 weeks off for radiation). She didn't need to have "gold beads" put in place (I know they are used to pinpoint the location but it might depend on what type of radiation is being used). My mom had a 4D CT scan to mark her and everything was done externally and very easily. Did you ask about options for the radiation that might not need a procedure done? It might be necessary in your husband's case, but like I said my mom didn't need to have anything like that done. Best of luck to you both…there is nothing easy about this cancer and now with the COVID-19 situation it only adds to our worries and concerns.

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We've made the decision not to have the procedure done tomorrow. With COVID-19 we believe the risks outweigh any benefits and they can do the radiation with out the beads.
The radiation he will be receiving will be 5 days, either a monday -friday or Wednesday, Thurs, Fri, 2 days off then finish up on Monday and Tuesday. The actual radiation session is 1/2 hour. Its a one time thing – 5 days and thats it. Is your mom's radiation similar?

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@colleenyoung

Hi Joann @survivor2 ane Marlene @sunshine041594 welcome to Mayo Clinic Connect and the Pancreatic Cancer support group.

@survivor2 I bet @marvinjsturing would like to connect with you. He just recently found out that his pancreatic cancer has returned and is now getting radiation treatments. Joann, you must be tolerating Capecitabine well if you're able to continue to work and normal life (although nothing is normal right now). What is your work? Are you able to work from home?

@sunshine041594 is your cousin being treated at Johns Hopkins? How is he doing?

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Yes, I've tolerated the drug fairly well.
Yes. I have side effects. Primarily the hand and foot syndrome that causes blister, skin peeling and extreme dryness but that's nothing compared to the nausea from the intravenous
mediations. I have a job that I love in youth development. I make everyday count and always remain positive. When my cancer came back it was in my lymph nodes, radiation wasn't recommended they put me back on chemo and because my scans started to show no growth they moved me to this maintenace drug (Capcetabine) and so far it's worked ok. I simply refuse to give up. I know how hard this road is and I fight everyday to support and encourage fellow Pancreatic cancer patients and their families.

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@survivor2 @sunshine041594 @baileycody @thally5299 I have several posts in this thread. Things have changed significantly since my first post. I was diagnosed with pancreatic cancer in May of 2014. My Whipple was done in June of 2014. Following surgery, I had 6 months of chemo – 3 weeks on and 1 week off. Two weeks after my chemo, I spent a week in my local hospital. I was sent home, but a week later, I was in the hospital again. This time my doctor sent me to Mayo where I spent another week in the hospital. It was determined that because of a rare reaction to my chemo, I developed atypical Hemolytic Uremic Syndrome. I spent most of 2015 going to Mayo to be treated for aHUS. By the time, that was under control my kidney function was down to about 15%. In June of 2019, I had my 5 year PET scan. Once again, there was no evidence of disease and Mayo told me I didn't need to come back. Last December we moved and I had to find new doctors. My new oncologist wanted a PET scan done. Two doctors looked at my scan. One said it was inconclusive. The second doctor said it looked like cancer. I went to Mayo for a second opinion. They did a PET/MRI and a biopsy. It was determined that my cancer had come back on what was left of my pancreas. Because of artery involvement, surgery is not an option. Because of my kidney problems, I can't have chemo. This morning, I had my 8th radiation treatment. I am scheduled for a total of 25 treatments – 5 treatments a week. After my radiation is done, I have to wait 3 months. Then I can go back to Mayo to see if I can have surgery to remove the rest of my pancreas.

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@baileycody

We've made the decision not to have the procedure done tomorrow. With COVID-19 we believe the risks outweigh any benefits and they can do the radiation with out the beads.
The radiation he will be receiving will be 5 days, either a monday -friday or Wednesday, Thurs, Fri, 2 days off then finish up on Monday and Tuesday. The actual radiation session is 1/2 hour. Its a one time thing – 5 days and thats it. Is your mom's radiation similar?

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Yes, that’s exactly what my mom is doing. She just has 2 more treatments left and goes back to chemo next Monday. She’s had no side effects…thank God. If you have any questions don’t hesitate to ask me 😊

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