1. < Pancreatic Cancer
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.

Amanda Burnett | @amandaa | Jul 23, 2021

Hi @dugancarol,and welcome to Mayo Clinic Connect. I moved your post over to the group that you originally posted to so we can get you connected with others that are going through similar situations. A lot of times, if your markers are going up, it means the treatment may not be working yet.
How long have you been doing your treatment?

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1 reply
dugancarol | @dugancarol | Jul 23, 2021
In reply to @amandaa "Hi @dugancarol,and welcome to Mayo Clinic Connect. I moved your post over to the group that..." + (show)
@amandaa

Hi @dugancarol,and welcome to Mayo Clinic Connect. I moved your post over to the group that you originally posted to so we can get you connected with others that are going through similar situations. A lot of times, if your markers are going up, it means the treatment may not be working yet.
How long have you been doing your treatment?

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I have had 3 so I was kind of worried

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1 reply
Amanda Burnett | @amandaa | Jul 23, 2021
In reply to @dugancarol "I have had 3 so I was kind of worried" + (show)
@dugancarol

I have had 3 so I was kind of worried

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I would most definitely bring this up with your physician.
@ryanmary3341 was waiting on follow up testing to check how treatment was working. I'd also like to bring back @dotmoto, @skkirby, and @trp to share with you also.
Other than your marker going up, are you having any adverse reactions to the treatment?

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2 replies
dugancarol | @dugancarol | Jul 23, 2021
In reply to @amandaa "I would most definitely bring this up with your physician. @ryanmary3341 was waiting on follow up..." + (show)
@amandaa

I would most definitely bring this up with your physician.
@ryanmary3341 was waiting on follow up testing to check how treatment was working. I'd also like to bring back @dotmoto, @skkirby, and @trp to share with you also.
Other than your marker going up, are you having any adverse reactions to the treatment?

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I have mentioned it to my doctor and plan to again. I have not had any adverse reactions just some neuropathy in my fingers.

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ryanmary3341 | @ryanmary3341 | Jul 23, 2021
In reply to @amandaa "I would most definitely bring this up with your physician. @ryanmary3341 was waiting on follow up..." + (show)
@amandaa

I would most definitely bring this up with your physician.
@ryanmary3341 was waiting on follow up testing to check how treatment was working. I'd also like to bring back @dotmoto, @skkirby, and @trp to share with you also.
Other than your marker going up, are you having any adverse reactions to the treatment?

Jump to this post

In reaction to my feethurting, my doctor said to stop taking the Xeloda and get a foot cream with 20o/o urea in it. Couldn't find it walmart so I came home and iced it down. Don't know what else I can do, if any of your followers has any suggestion, let me know!

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1 reply
kyaeger | @kyaeger | Jul 28, 2021

Hi.
I am Kyle from A2 Michigan.
I was diagnosed a year ago.
Since then I’ve had 9 Folfirinox chemo treatments followed by an attempted and aborted Whipple surgery because of vein involvement. I then had radiation treatments.
I am currently at Mayo Clinic to get a second opinion whether or not surgery is possible.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 28, 2021
In reply to @kyaeger "Hi. I am Kyle from A2 Michigan. I was diagnosed a year ago. Since then I’ve..." + (show)
@kyaeger

Hi.
I am Kyle from A2 Michigan.
I was diagnosed a year ago.
Since then I’ve had 9 Folfirinox chemo treatments followed by an attempted and aborted Whipple surgery because of vein involvement. I then had radiation treatments.
I am currently at Mayo Clinic to get a second opinion whether or not surgery is possible.

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Hi Kyle, welcome. I'm tagging a few other members who have been to Mayo Clinic for pancreatic cancer treatment like @marvinjsturing @mayojoe7 @kjrita @buckslayer @chemobile @maryvallis512 @susan2018 @colorafo19 and others. They can answer questions you may have about Mayo Clinic and more.

Kyle are you at Mayo Clinic right now? May I ask which location?

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1 reply
marvinjsturing | @marvinjsturing | Jul 29, 2021
In reply to @kyaeger "Hi. I am Kyle from A2 Michigan. I was diagnosed a year ago. Since then I’ve..." + (show)
@kyaeger

Hi.
I am Kyle from A2 Michigan.
I was diagnosed a year ago.
Since then I’ve had 9 Folfirinox chemo treatments followed by an attempted and aborted Whipple surgery because of vein involvement. I then had radiation treatments.
I am currently at Mayo Clinic to get a second opinion whether or not surgery is possible.

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@kyaeger I think it is a good idea to get a second opinion at Mayo. The doctors and the surgeons there are some of the best in the world. My Whipple was done 7 years ago at Mayo in Rochester. I know that they have developed procedures in recent years that enable them to do surgery even in very complex situations. Please keep us informed about what the doctors there tell you. I pray that they will be able to help you.

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kyaeger | @kyaeger | Jul 29, 2021
In reply to @colleenyoung "Hi Kyle, welcome. I'm tagging a few other members who have been to Mayo Clinic for..." + (show)
@colleenyoung

Hi Kyle, welcome. I'm tagging a few other members who have been to Mayo Clinic for pancreatic cancer treatment like @marvinjsturing @mayojoe7 @kjrita @buckslayer @chemobile @maryvallis512 @susan2018 @colorafo19 and others. They can answer questions you may have about Mayo Clinic and more.

Kyle are you at Mayo Clinic right now? May I ask which location?

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Yes. At the time of your response I was at St. Mary’s campus waiting to have a laparoscopic procedure. It was my 3rd day at Mayo Clinic.
I should add that Dr. Truty would do a Total Pancreatectomy. I would be interested in others experience with this and coming from outside to have this surgery done at Mayo.
Thank you Colleen

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 2, 2021
In reply to @dugancarol "I am receiving abraxane/gemcitabine chemo treatment. I am seeing my CA-19 go up. I thought it..." + (show)
@dugancarol

I am receiving abraxane/gemcitabine chemo treatment. I am seeing my CA-19 go up. I thought it would decrease. Have others seen this? Are there other chemo treatments?

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Carol, you might be interested in this related discussion:
- CA 19-9 and pancreatic cancer: What do the numbers mean? https://connect.mayoclinic.org/discussion/ca-19-9/

Have you talked to your oncologist in the meantime about what the rising numbers mean for you?

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