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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.

gracect | @gracect | 1 day ago
In reply to @sheridanb "My husband was on folfirinox first... every other week with pump for 6 months. Then reduced..." + (show)
@sheridanb

My husband was on folfirinox first... every other week with pump for 6 months. Then reduced to a maintenance dose for a few months. But, CA19-9 started to go up, and new spots seen in the scans. Switched to G/A a few months ago... once/week for 3 weeks then one week off. Not as harsh for him as the folfirinox but still often could also be described like markymark as a fatigue ridden couch potato. He's at the end of his week off right now and has a little more energy.
He lost weight on folfirinox... those last few months of it were really rough on him. Regained the weight when on the maintenance dose. Now has put on more weight... I guess from me bugging him to eat, plus he's just not burning any calories when couch surfing.
Latest CA19-9 numbers down in the 300s which sounds high unless you compare them to the 39,000 + of 15 months ago. I'm hoping if numbers continue to come down, and scans look good that he can get to an every other week treatment schedule so he can regain something a little more similar to how he used to live. I don't think he will get back to backpacking and whitewater kayaking... but maybe some short skis or short hikes or kayaking on a lake would be nice. I'm dreaming at this point.... just hoping he can do something outdoors again at some point as it has been a frustrating journey for him. He walked the mile to get the mail with me today and that is something! He was a strong, healthy, very active 69 year old when this was diagnosed and I think that helped with the battles he's endured so far.

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I do hope he gets on every two weeks. It is just so much better in our case to have more energy days. God Bless and fingers crossed for good scans and numbers!

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markymarkfl | @markymarkfl | 21 hours ago

Minor correction to my previous post (3 up from this one):

It's the Bristol Meyers Squibb (BMS) patient financial assistance program for Abraxane. AbbVie is for Creon.

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