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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.

Profile picture for demooretucson
demooretucson | @demooretucson | 1 day ago
In reply to @ardithbjorge "@colleenyoung I am coming to Mayo Clinic for a second opinion on a recent diagnosis of..." + (show)
Profile picture for ardithbjorge @ardithbjorge

@colleenyoung I am coming to Mayo Clinic for a second opinion on a recent diagnosis of pancreatic cancer surgery. My local doctors have staged it at stage one as it was found accidentally when having a CT scan to look for possible blood clots in the lungs. Anyone else had treatment at Mayo for stage one?

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@ardithbjorge

Dear Ardithbjorge -- As a 70 year old male with unstaged bile duct cancer, in October 2024, I had curative bile duct resection and reattachment surgery at Mayo Rochester by Dr Mark Truty. Six months prior to my surgery I met with Dr. Truty for an initial consult. Very impressed and pleased by the entire experience. Prior to my surgery, I had 10 biweekly chemo treatments and 28 daily (M-F) treatments at the University of Arizona Cancer Center in Tucson. Dan

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gin84 | @gin84 | 1 day ago
In reply to @demooretucson "@gin84 Dear Gin84 -- I was 69 when my wife and I were completely surprised (shocked)..." + (show)
Profile picture for demooretucson @demooretucson

@gin84

Dear Gin84 -- I was 69 when my wife and I were completely surprised (shocked) by a bile duct cancer (cholangiocarcinoma) diagnosis in January 2024. My curative 10 month treatment plan included 10 biweekly chemo treatments, 28 daily radiation sessions (M-F) and a 4.5 hour bile duct resection and reattachment surgery at Mayo Rochester with Dr. Mark Truty a year ago. As your Mom and family embark on this unexpected and unwelcome journey, you're not alone, and 21st-century American medicine is delivering a variety of options. You're going to learn a lot along the way. I recommend starting by identifying what comprehensive cancer centers are near you. Dan

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@demooretucson Thank you for taking the time to reply. I am sorry for what you and your wife have had to go through. My mom has already said she isn't interested in chemo or radiation treatments. We just don't understand why this is all happening. She has lead such a wonderful life and never smoked or drank and always took care of herself and others. Life feels very unfair right now.

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keepingoptimistic | @keepingoptimistic | 12 hours ago
In reply to @jim1234 "Hi I was diagnosed with stage4 pancreatic cancer. I haven’t started treatment yet. I’m looking at..." + (show)
Profile picture for jim1234 @jim1234

Hi I was diagnosed with stage4 pancreatic cancer. I haven’t started treatment yet. I’m looking at trials but the one I was interested in it’s really hard to get an appointment in a timely matter. So I may have to just start on the standard folfirinox. Getting educated on this set me back days and I did delay things more by not canceling our 5 day vacation. I have an appointment to get my port installed. Worried about quality of life on Folfirinox My oncologist say I can keep working out , keep hunting and even have 2 beers a couple times a week. I’m lost right now

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@jim1234

Can't speak for your Folfirinox treatment or dosages but for my 90 lb wife (was 125) it has been very difficult to tolerate, She is sick for days afterward. This could be the stage 4 cancer advancing, the Folfirinox, or both. Each patient tolerates this differently. Her body revolted after treatment one, then each treatment became easier to tolerate but #11 has been very difficult.

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keepingoptimistic | @keepingoptimistic | 12 hours ago
In reply to @reme51 "@grams2015 So it sounds like you're not on chemo? Or maybe things have changed since the..." + (show)
Profile picture for reme51 @reme51

@grams2015
So it sounds like you're not on chemo? Or maybe things have changed since the 10th?
I was diagnosed 1.5 months ago with adenocarcinoma, well-differentiated, in the tail of the pancreas, 2.7 x 1.4 cm. I was hoping for immediate surgery but now they're saying the mass has encased the splenic artery and surgery may not be possible. Disappointed and confused. But I meet the surgical oncologist tomorrow at OHSU in Portland, OR.
How are you doing? Have you had more surgery? Hope things are moving forward for you...

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@reme51

You might look into NanoKnife. If the tumor is confined to the Pancreas my understanding is that it can be ablated without harm to the arteries.

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etto | @etto | 12 hours ago

I was diagnosed 2 years ago, did folfirinox, then radiation with the MR Linac then monitored with CTs for nearly a year with no mets noticed, though now have a met on my right ascending colon - not the usual for pancan so several CT readers missed it. Now on gemcidabine abraxane every other week - 3 so far, along with 4 high dose C infusions. These were to be 3/week but the supply has suddenly dried up. So far I've been reading up here on reactions to gem + abraxane to see what the future may bring.

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