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.

@mayoconnectuser1

pp22,

Are you saying you are going to Mayo (Rochester) ... I'm not sure what "outside of Mayo," means?

There are at least two surgeons at Mayo who perform laparoscopic Whipple procedures. If you are close geographically to Mayo, have you contacted them?

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No, we are outside of the Mayo network for insurance. We're going to the U of M for his surgery and will be talking about what type Whipple (open, laparoscopic, robotic...) later this week.

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Hi. My name is Ed.
from 2013 to 2016 I fought metastatic melanoma. Bless the Lord I received Keytruda and it seems to have cured the disease. Then early this spring it looked like the cancer was back in my lungs but further investigation showed it was metastatic pancreatic cancer. I am now on a regimen of gemcitabine and my CA, 19–9 has come down all the way to 21. the tumors don’t seem to have changed much, but I am happy not to have my hair falling out and nausea. I am just very tired almost all the time.Doctor Pitot at the Mayo Clinicthe male recommended proceeding without the usual Abraxane accompaniment, and I am very grateful.

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@pleasepray22

No, we are outside of the Mayo network for insurance. We're going to the U of M for his surgery and will be talking about what type Whipple (open, laparoscopic, robotic...) later this week.

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Ah, I understand.

Are laparoscopic Whipples available at U of M?

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Hi, I'm Patti:
I was diagnosed with PDAC July 2021. Since we're asked to relate how we were diagnosed (or the symptoms), here's how it went for me:

In December 2020 (at the start of the covid issues) my stool changed. Instead of my typical stool shape, intermittently, I would see small, hard little balls (I called them "deer droppings" -- that's what they resembled). Doctors weren't seeing patients unless it was a true emergency then, so did nothing. By June, the "deer droppings" became the norm along with increased bouts of constipation (extremely rare for me). In July, I was so constipated I saw my GP. The standard prescription stuff didn't work. I was adopted and the only genetic relative I could find would only tell me that diabetes was a family norm and my mother died of cancer. No details. My GP considered my sparse family medical history. He ordered a colonoscopy, but first sent me for a CT as this was the first time this ever happened and it was unusual. The CT showed a 1B tumor.

BTW, when I received the tumor DNA results (KRAS tumor) it also noted I had a second mutation -- one that's associated with "old age onset of type II diabetes". At 76 I'm not diabetic (yet), but pancreatic cancer seems to sometimes have a relationship to diabetes, or least it can be an early warning sign when it appears suddenly in older adults. Thought this was interesting to mention.

Hope this helps someone.

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@philv

My name is Phil, I'm 79 years old. Was diagnosed with Pancreatic Cancer in June of 2022.
Had whipple procedure end of June.
Have had 6 of 12 chemo treatments. Dr. Gave me a chemo break for one month to get stronger. I start back tomorrow.
Had severe fatigue and diarrhea.
Have had 2 CT's both were clear. CAC19 were down.

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Hi Phil,
I am 66 and was diagnosed in August 2022 with stage 1b pancreatic cancer after a distal pancreatectomy in July. I have had five Folferinox treatments every two weeks, and the doctor gave me an extra week off after number 3 and number 5. I had diarrhea that was controlled by OTC meds and fatigue as well, plus neuropathy, nausea and GERD. Did you find that side effects got worse after each subsequent cycle? Were you on Folferinox? Thanks and best wishes.

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@philv

My name is Phil, I'm 79 years old. Was diagnosed with Pancreatic Cancer in June of 2022.
Had whipple procedure end of June.
Have had 6 of 12 chemo treatments. Dr. Gave me a chemo break for one month to get stronger. I start back tomorrow.
Had severe fatigue and diarrhea.
Have had 2 CT's both were clear. CAC19 were down.

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Hi Phil,
That’s great news on the CT scans. I am just finishing my 2nd pre-op infusion. It has been quite a journey as you well know. I am trying to get stronger between infusions. It is a full time job to eat and move. I have started adding content to YouTube for my own record as well as people searching for real stories. Stay strong!!
Steve

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@stephenkogler

Hi Phil,
That’s great news on the CT scans. I am just finishing my 2nd pre-op infusion. It has been quite a journey as you well know. I am trying to get stronger between infusions. It is a full time job to eat and move. I have started adding content to YouTube for my own record as well as people searching for real stories. Stay strong!!
Steve

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Thank you Steve
Best of luck and prayers for you.

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@ken240

Hi Phil,
I am 66 and was diagnosed in August 2022 with stage 1b pancreatic cancer after a distal pancreatectomy in July. I have had five Folferinox treatments every two weeks, and the doctor gave me an extra week off after number 3 and number 5. I had diarrhea that was controlled by OTC meds and fatigue as well, plus neuropathy, nausea and GERD. Did you find that side effects got worse after each subsequent cycle? Were you on Folferinox? Thanks and best wishes.

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I just finished chemo 7 of 12.
I had a month break due to diarrhea and dehydration. Feeling better now and back on schedule. The Dr. Eliminated the on of four medications that was giving me problems.
Best if luck.

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Sorry, i joined this group for my father in law who just got diagnosed with pancreatic cancer today (almost, as he has been referred to Medanta Gurgaon for appointment tomorrow)
Can I remain in this group on behalf of my father in law. Please suggest

Regards
Anand

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@anandktripathi

Sorry, i joined this group for my father in law who just got diagnosed with pancreatic cancer today (almost, as he has been referred to Medanta Gurgaon for appointment tomorrow)
Can I remain in this group on behalf of my father in law. Please suggest

Regards
Anand

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Of course, Anand. Welcome. I hope all goes well with his appointment.

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