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.

Colleen Young, Connect Director | @colleenyoung | Jul 7, 2022

In reply to @iinvesnu "Has anyone heard of or tried Enterade? The chemo drink?" + (show)

Hi Debbie, you were asking about enterade? My understanding is that enterade helps alleviate gastrointestinal side effects like diarrhea. Has it helped you?

ggst | @ggst | Aug 21, 2022

Just diagnosed by MYChart on Thursday, Aug. 18. Had a brief discussion with PA who ordered the scan and have a liver biopsy scheduled for Friday Aug. 26. I feel my clinic, Park Nicollet has left me flying in the wind. I have questions and no answers. I was a previous patient for knee arthritis at Mayo so I called them. They want the biopsy results as soon a I get them and will slot me in for an exam. I’m exhausted as the pain wakes me up at night. Tylenol mostly helps. Think the pain is related to what I eat and right now nothing is appealing. I need some guidance.

ggst | @ggst | Aug 22, 2022

I’ve been diagnosed on Aug 18- through My Chart and have a liver biopsy scheduled for Friday. Called Mayo and they will take me as soon as my results are in. In the meantime, I am having so much pain at night and trouble eating. And high anxiety. Any help is appreciated.

pmerrill54 | @pmerrill54 | Aug 22, 2022

When I was first diagnosed I was given morphine for pain. It worked, but it is slow acting and that meant a lot of ups and downs, including at night. My insurance got some reason didn’t cover an oxycodone product so my palliative care team member put me on a low dose fentanyl patch. That was extremely effective and when the time came, I had no trouble getting off by taking one step with even litter dose.

I would ask your PCP or Mayo team for help with pain management. Don’t suffer in silence! And good luck!

pmerrill54 | @pmerrill54 | Aug 22, 2022

In reply to @ggst "I’ve been diagnosed on Aug 18- through My Chart and have a liver biopsy scheduled for..." + (show)

I put this in as a new post rather than as a reply…
——
When I was first diagnosed I was given morphine for pain. It worked, but it is slow acting and that meant a lot of ups and downs, including at night. My insurance got some reason didn’t cover an oxycodone product so my palliative care team member put me on a low dose fentanyl patch. That was extremely effective and when the time came, I had no trouble getting off by taking one step with even litter dose.

I would ask your PCP or Mayo team for help with pain management. Don’t suffer in silence! And good luck!

ggst | @ggst | Aug 22, 2022

In reply to @pmerrill54 "I put this in as a new post rather than as a reply… —— When I..." + (show)

Thank you, Pmerrill54. I still don’t have a team at Mayo and my biopsy is at Park Nicollet on Friday. After the results, Mayo will assign a team. I also called The U cancer center so will see what they have to say. Meanwhile, I am up most of the night every night with pain. Gummies and Tylenol are not handling it anymore. I do have some oxy left over from recent knee surgery so I may try that. But I will ask about the patch when I get a team. Much appreciate your reply.

pmerrill54 | @pmerrill54 | Aug 22, 2022

In reply to @ggst "Thank you, Pmerrill54. I still don’t have a team at Mayo and my biopsy is at..." + (show)

Friday is a long way off if you’re in pain and not sleeping! Can your primary care physician help?

Colleen Young, Connect Director | @colleenyoung | Aug 22, 2022

In reply to @ggst "Thank you, Pmerrill54. I still don’t have a team at Mayo and my biopsy is at..." + (show)

@ggst, I agree with @pmerrill54. Friday is a long time to wait while in pain and not able to sleep. I would contact your primary care physician as suggested but also the current team you have Park Nicollet.

Do you have a Mayo Clinic patient number and/or access to the Mayo patient portal already or not yet?

Colleen Young, Connect Director | @colleenyoung | Aug 22, 2022

In reply to @ggst "I’ve been diagnosed on Aug 18- through My Chart and have a liver biopsy scheduled for..." + (show)

@ggst, I forgot to address the anxiety you're experiencing too. I can imagine that anxiety is running high right now. Here is a self-guided course that you might find helpful.

- Stress Management for Cancer https://mccmscontent.mayo.edu/LSC/CEC/stress-management-for-cancer/index.html#/

What helps you calm your anxiety?