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.

itsamarathon2025 | @itsamarathon2025 | Jun 22 9:37pm

In reply to @colorafo19 "It does not. It needs to be replaced every 3 months." + (show)

Not sure about that. I've had my Stent in over a year and just talked to a specialist and was told technically they have no expiration. Of course the initial plastic ones need to be replaced with metal within 3 months. Anyone out there have a metal stent that's been in for year(s) without being replaced?

suelannon | @suelannon | Jun 22 3:28pm

In reply to @valerina30 "After being diagnosed with mass on pancreas. Im waiting for biopsy results. Im also gonna try..." + (show)

My husband had Distal Surgery last July 2024 and could not eat. He had lost over 40 lbs and still losing. Someone at work mentioned RSO to me so I asked Oncologist and she said she was
a big fan. He started taking that and it was amazing. He has gained back 30 lbs so far.

56pan | @56pan | Jun 22 1:24pm

In reply to @denam1 "Couldn’t agree more! Dennis A" + (show)

https://ascopubs.org/doi/10.1200/JCO.20.01399
I spent some time reading up on chemotherapy induced neuropathy last night and over the past few days. This, in my opinion, is the best article I found. Bears out my belief that the only thing that helps is getting off chemo and plenty of time. I'll find out on July 17 after an MRI if I'm a candidate for SBRT for the two tumors I have that have been reduced due to the chemo. Liver and pancreas. If that procedure works and my oncologist takes me off chemo, I'll pass on the results here. I started on Folfirinox and am now on Gemcitibine/Abraxane. The Abraxane has made my neuropathy much worse.

Dennis A | @denam1 | Jun 22 11:59am

In reply to @56pan "I'm taking B12 on the advice of my oncologist, also gabapentin. Neither seem to make any..." + (show)

Couldn’t agree more! Dennis A

marienewland | @mnewland99 | Jun 22 9:12am

In reply to @kakalena "My oncologist recommended B complex, which I was already taking. He also said Alpha lipoic acid,..." + (show)

Wish I could "repost" this like in LinkedIn. Hopefully the anti-neuropathy regimen you are using could also work for others. There's also the booties and mittens with freezed iced pack inserts that you wear while getting a chemo that has the potential to cause neuropathy. I can't personally attest to their effectiveness, only because I got them after my treatment with abraxane was ended due to the neuropathy but others seem confident in their benefits.

56pan | @56pan | Jun 22 8:02am

In reply to @kakalena "My oncologist recommended B complex, which I was already taking. He also said Alpha lipoic acid,..." + (show)

Good information Kalena. Thanks for taking the time to post it.

gamaryanne | @gamaryanne | Jun 22 7:36am

In reply to @rosebella "I am new to the Group. I have been reading posts for a couple weeks. My..." + (show)

This is shocking news to receive. Stage IV is such a scary term. But it is just that. A term. A label. If your husband is healthy and you have smart, aggressive doctors, this can be deterred. I was dx 11/2021! I am not cured but I am still living a relatively normal life journeying through different therapies. I am on Naliri now.
Everyone’s case is different! Many have seen chemo shrink tumors off the portal vein and moved on to surgery. Try to keep him active, engaged in things he enjoys doing, and allow for chemo recovery time each two weeks. Pls also do not negate second opinions! Very important, even if you are at a pancreatic center of excellence. If you are not, pls make every effort to get to a doctor at one. Very good information in posts here. May God give you wisdom and increased faith as you walk this journey.💜

rosebella | @rosebella | Jun 21 8:05pm

In reply to @bradthompson88 "I’m 55 and his story sounds a lot like mine. I go to try to get..." + (show)

Thank you Brad. It sounds like we're in the initial shock and grief phase. I read your introduction post & f/u posts and we can definitely relate!

bradthompson88 | @bradthompson88 | Jun 21 6:39pm

In reply to @rosebella "I am new to the Group. I have been reading posts for a couple weeks. My..." + (show)

I’m 55 and his story sounds a lot like mine. I go to try to get a ct guided biopsy for my liver. Plenty of tears shed here too. I asked PanCan for survivor names as well as those on here. They help show me that we can live much longer than Dr. Google says. I want to get started on my chemo. I’m glad he is getting started on his. I wish your husband and you all the best and may God be with you through all of this.

kakalena | @kakalena | Jun 21 11:11am

In reply to @barnesjt59 "I do not have pain yet. Just occasional stomach pain and I take Creon with my..." + (show)

My oncologist recommended B complex, which I was already taking. He also said Alpha lipoic acid, and L-Glutamine might help. I am on gem-brax and just had my 8th treatment which is when my neuropathy in feet started., so am taking all of the above, plus Epson salt foot soak really helped. As of today. 3 days later, no pain or tingling.