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.

beachdog | @beachdog | Jun 28, 2021

In reply to @trp "Hi Colleen, I just have no idea what to expect from this surgery. I guess more..." + (show)

Hi Tim, good luck with your treatment and surgery. My wife seems to be at the extreme for what her post treatment and surgery life is like but then her surgery was pretty extreme too. Her surgery was modified Appleby not Whipple like most. She also lost her gall bladder, spleen, adrenal gland 23 lymph nodes and 60% of the pancreas. As far as we know almost a year and a half out, the pancreas makes insulin and she not being treated for insufficiency other than Creon for digestion. Her biggest problem is the bile dumping due to no gall bladder. Everyone is going to be different. One thing that the doctors seem to be overly optimistic is how long your recuperation and achieving a new normal will take. They might say 2 months of even 6 months but don't be impatient it could take longer, it did for my wife. Our prayers are with you.

Colleen Young, Connect Director | @colleenyoung | Jun 28, 2021

In reply to @annebauer19 "The pain makes him less eager to eat. But fortunately his appetite has remained pretty good...." + (show)

Anne, have you requested a consult with a palliative pain management specialist?

trp | @trp | Jun 28, 2021

In reply to @colleenyoung "Hi Tim and welcome. It's uncanny how similar your experience is with @skkirby. I hope Sherry..." + (show)

Hi Colleen,
I just have no idea what to expect from this surgery. I guess more than anything I would just like to know if there is a semblance of "normal" after distal pancreatectomy and what does that look and feel like?
Thanks!

Colleen Young, Connect Director | @colleenyoung | Jun 28, 2021

In reply to @trp "Hi Sherry, My name is Tim and I am new to this forum and saw your..." + (show)

Hi Tim and welcome. It's uncanny how similar your experience is with @skkirby. I hope Sherry will return to give you tips for pre and post op. I think @hopeful33250 might also have some thoughts and tips to share.

Tim, what questions do you have?

annebauer19 | @annebauer19 | Jun 25, 2021

In reply to @colleenyoung "Pain is draining - for both of you I might add. Has he been able to..." + (show)

The pain makes him less eager to eat. But fortunately his appetite has remained pretty good. We are struggling to find someone who will help to figure out what the pain is related to and what he can take for it other than opiates.

trp | @trp | Jun 25, 2021

In reply to @skkirby "Hello- I am not sure if I fit into this group so please let me know..." + (show)

Hi Sherry,
My name is Tim and I am new to this forum and saw your post regarding your surgery. Hope you are feeling better. I am scheduled for an August 20th, 2021 distal pancreatectomy and my surgeon is also Sean Cleary. My NET is also located in the neck of the pancreas. During my consult a couple weeks ago, he said he would be removing my gall bladder and possibly my spleen as well. Just wondering since we have similar issues what advice you can offer for pre and post op. Thanks!

Colleen Young, Connect Director | @colleenyoung | Jun 21, 2021

In reply to @annebauer19 "Hello again: thanks for the comments about PET scans. My husband has started chemo this week..." + (show)

Pain is draining - for both of you I might add. Has he been able to talked to the oncologist or symptom management nurse about the pain? They should be able to give him something to ease the pain.

Does this affect his appétit?

annebauer19 | @annebauer19 | Jun 21, 2021

Hello again: thanks for the comments about PET scans. My husband has started chemo this week so we are just learning the rhythm of the 2 week cycles. So far his biggest complaint is stomach pain which comes and goes. It's not clear if it's related to the tumor. Docs seem to be unsure. Has anyone experienced this and found something that helps?? I am trying to keep up his spirits and mine. This pain seems to drain him.

ryanmary3341 | @ryanmary3341 | Jun 12, 2021

In reply to @hopeful33250 "Hello @ryanmary3341 and welcome to Mayo Clinic Connect. I'm glad that you joined Connect and the..." + (show)

My chemo started yesterday, and so far no side effects. I will undergo 6 cycles(6) months of therapy, 3weeks on one week off for total of 6 months. I was doagnosis with EPI first and my gastro Dr. sent my to get further testing witch showed a 3cm cyst on my panceras and then he sent me to a surgical onocologist who reccomended the whipple surgery.

marvinjsturing | @marvinjsturing | Jun 11, 2021

In reply to @hopeful33250 "Hello @annebauer19 You ask a good question. As you know, on Mayo Connect we are not..." + (show)

@annebauer19 @hopeful33250 My experience began 7 years ago. My oncologist wanted to do CT scans after my Whipple. CT scans work better when contrast is used. My chemo damaged my kidneys and my body cannot handle the contrast. I had PET scans for 5 years because instead of contrast they use a radioactive sugar which my kidneys can handle. Since my cancer came back a year and a half ago, I have been going back to Mayo every 3 months for a PET/MRI scan.

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