Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young @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?

@julie2018

Hello everyone. My husband was diagnosed In July of 2018 with cancer in the pancreas tail with metastases to the liver in addition to veins around the spleen. We came to Mayo hoping it might be operable, or failing that, eligible for a clinical trial. The trial drug, along with Abraxane and Gemzar stopped working after 9 months. Then he began a regimen with 5 FU. Now I am afraid resistance is again setting in. Even though the last scan did not show progression, his CA 19-9 has begun to rise and his ascites are accumulating at an ever faster rate. He has to have them drained every 10-14 days. The last progress notes mentioned speaking to us about a biopsy on his next visit. I am hoping for better news, but fearing the worst. Stories of hope are most welcome!

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Praying for you.

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I hope you had a wonderful holuday and got to meet your grandbaby!

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@susan2018

@marvinjsturing I think we may have communicated in the past. I just reviewed your posts. I’m wondering how you’re doing, whether there is any news. My husband had his stage IIA pancreatic cancer diagnosis after a Whipple at Mayo for IPMN pancreatic cysts the end of August last year. He then had 6 months of Folfirinox chemo. We’re going back to Mayo the end of this month after a locally done CT and PET scan evidently shows something that is worrisome at the surgical bed. His CA-19 and CEA labs are within normal range but we haven’t met with our local oncologist yet to be briefed on the PET results. We don’t know much yet, only that Mayo has already called us and scheduled him for multiple appointments, EUS, surgeon, oncologist and with a radiation oncologist. So any insight anyone can share about Radiation after Whipple and Chemo would be appreciated. I obviously don’t know much at this point. I’m wondering what Mayo recommends, regular radiation vs proton, and on what basis. Hope you are managing and thanks!

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Is there usually radiation and chemo after whipple too? Hubby did it on the front end and we are praying he's eligible for surgery now.

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@cathyras

Hello,
I'm Cathy and I live in Portland OR. I have been married for almost 24 years and we have a 13 year old daughter.
I was very recently diagnosed. I am scheduled to have surgery this Friday (Jan 31,2020) The cancer is in the tail. I will be having my spleen removed along with the lesion. I am getting more scared and anxious. But trying very hard to keep a positive attitude. I have been walking every day, eating pretty well overall and drinking a lot of water. They told me I'll probably be in the hospital three to five days and after surgery i'll have chemotherapy. Thank you

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Hi Cathy, i pray you are doing well. We are from Kelso WA. Heading back to Mayo now to see if whipple is possible. Believing in healing.

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@jeanne5009

@Fassbinder
Took my guy to the Dr today to have staples removed and check on the fluid in the drain after Whipple two weeks ago. Its looking like a leak. They are sending it out to the lab. Otherwise, doing well. Praying for no fever…he has had pancreatitis before and a gall bladder removal that led to sepsis…thought we were over this!! Can also relate to not being there for him at the hospital…he was in 9 days. Very hard to be a caregiver for someone on Fentanyl epidural…the nurses were great!
Will be watching your progress…

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Covid is making everything so much more difficult. I'm sorry you couldn't be there with him.

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@debsid

I hope you had a wonderful holuday and got to meet your grandbaby!

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Thank you, @debsid, we did. We also had a lovely 2 week visit with her in June. Baby visits are such good medicine. We hit another milestone yesterday. When my husband went in for paracentesis yesterday, there was not enough fluid to drain, even though it had been 2 weeks since the last draining. We wonder if the doses of Neulasta after the last 2 chemo infusions are what help slow down the ascites.
How are things with you?

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@julie2018

Thank you, @debsid, we did. We also had a lovely 2 week visit with her in June. Baby visits are such good medicine. We hit another milestone yesterday. When my husband went in for paracentesis yesterday, there was not enough fluid to drain, even though it had been 2 weeks since the last draining. We wonder if the doses of Neulasta after the last 2 chemo infusions are what help slow down the ascites.
How are things with you?

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That is awesome. We are heading back to Phoenix for testing, team meetings to find out if he is now eligible for whipple surgery. He's feeling really good except for the spike in ca19-9 after rad/onc. Praying there was lots of shedding going on.

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@debsid

Does the stent clear naturally? My hubby was feeling really poorly for 3 weeks at the end / after radiation. I am going ask about the bile duct stent /billiruben next time as we had a huge increase of ca19-9 during that time. Another test coming soon. Thank you! Blessings

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It does not. It needs to be replaced every 3 months.

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@colorafo19

It does not. It needs to be replaced every 3 months.

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Hubby's was placed in November. They usually note no change in location on scans but nohing about sludge. I'll ask. Thank you. Blessings

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@buckslayer

It's just not a smooth ride, is it?! I took my husband to our local ER Sunday night and he was transported to Mayo right away – blood loss and cultures indicated infections, which he also had while in the hospital three weeks ago for his Whipple procedure. Everything in recovery was going well until this episode. Eating fine after Whipple but it seemed tough to gain any weight and energy – maybe it was because the infections were still there, who knows! Hopefully he'll get back on track after this visit and not have another emergency. They are still not sure what caused the sudden bleeding but he'll remain in their care until they have some answers. Nothing appears to be leaking on scans. It sure is a drag not being there for him.

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Hello @fassbinder,

It has been a while since your last post about your husband's health. How is he doing?

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Hi, my name is Mary. I am a 62 yr old women who was diagnosed last week while out of state visiting my daughter. Thought I had a gallbladder attack and through a series of events and tests it was quickly diagnosed I have AdenoCarcinoma of the pancreas. I am devastated. My husband and I just retired and had plans to spend more time with our grandbabies and to travel. I’ve always ben extremely healthy and have always lived a healthy lifestyle. This diagnosis has taken away all my hope and I am devastated.

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My husband is the one who received the diagnosis, but the feeling of devastation you describe is familiar and understandable. No matter the treatments and outcomes, life will never be the same. We’re a year out from surgery at Mayo and six months of chemo. Now back in Rochester for tests after a worrisome scan. Let the emotions be for now, your action plan will soon occupy you, but you’ll be better prepared if you allow yourself to process your grief. You aren’t alone and your story isn’t done.

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