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.

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.

REPLY
2 replies
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
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?

Jump to this post

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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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

Jump to this post

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?

REPLY
2 replies
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?

Jump to this post

I have had 3 so I was kind of worried

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1 reply
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 20, 2021

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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1 reply
dugancarol | @dugancarol | Jul 20, 2021

Hi I am Carol. I was diagnosed in September 2020. I am now in stage 4. I was wondering what others are using for chemo treatment. I am on abraxane/gemcitabine but my CA-19 is going up. Have others seen this?

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ryanmary3341 | @ryanmary3341 | Jul 15, 2021
In reply to @hopeful33250 "I'm glad to hear that you are coping with the chemo treatments and dealing with the..." + (show)
@hopeful33250

I'm glad to hear that you are coping with the chemo treatments and dealing with the side effects, @ryanmary3341. At some point, I'm assuming that you will have some follow-up tests to see how the chemo is working. Do you know the date of the follow-up tests?

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Have not been told on when the follow-up tests will be conducted.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 15, 2021
In reply to @ryanmary3341 "Yes, I started my second chemo cycle on Friday. I got a port installed in my..." + (show)
@ryanmary3341

Yes, I started my second chemo cycle on Friday. I got a port installed in my chest which makes it easlier to administer the chemo and draw blood. This second time around is effecting me a little harder. I am feeling a little more fatigue easier, Monday I slept for most of the day. A little more nausea than usual. Not too much of an appetite, but forcing myself to eat more small meals to keep my weight up. So far so good.

Jump to this post

I'm glad to hear that you are coping with the chemo treatments and dealing with the side effects, @ryanmary3341. At some point, I'm assuming that you will have some follow-up tests to see how the chemo is working. Do you know the date of the follow-up tests?

REPLY
1 reply
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