Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 10768
Joined: Jul 23, 2014
Pancreatic Cancer Group: Introduce yourself and connect with others
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?
Liked by Becky, Volunteer Mentor
debsid
@debsid
@debsid
Posts: 35
Joined: Jul 14, 2020
debsid
@debsid
@debsid
Posts: 35
Joined: Jul 14, 2020
@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!
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.
debsid
@debsid
@debsid
Posts: 35
Joined: Jul 14, 2020
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
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.
debsid
@debsid
@debsid
Posts: 35
Joined: Jul 14, 2020
@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…
Covid is making everything so much more difficult. I'm sorry you couldn't be there with him.
julie2018
@julie2018
@julie2018
Posts: 6
Joined: Sep 05, 2018
I hope you had a wonderful holuday and got to meet your grandbaby!
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?
debsid
@debsid
@debsid
Posts: 35
Joined: Jul 14, 2020
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?
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.
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
It does not. It needs to be replaced every 3 months.
debsid
@debsid
@debsid
Posts: 35
Joined: Jul 14, 2020
It does not. It needs to be replaced every 3 months.
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
Teresa, Volunteer Mentor
@hopeful33250
@hopeful33250
Posts: 10738
Joined: Mar 28, 2016
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.
Hello @fassbinder,
It has been a while since your last post about your husband's health. How is he doing?
maryvallis512
@maryvallis512
@maryvallis512
Posts: 7
Joined: Aug 01, 2020
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.
Liked by debsid
susan2018
@susan2018
@susan2018
Posts: 97
Joined: Nov 03, 2018
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.
Liked by Colleen Young, Connect Director, debsid
maryvallis512
@maryvallis512
@maryvallis512
Posts: 7
Joined: Aug 01, 2020
susan2018
@susan2018
@susan2018
Posts: 97
Joined: Nov 03, 2018
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.
My husband was diagnosed with pancreatic cancer in 2017 after thinking he was having gallbladder issues. We immediately called Mayo Rochester for a second opinion. He had chemo, radiation and a Whipple. There is hope for you! My husband is still here and doing well. He has had a couple of set backs but he is here and enjoying life!!! Prayers to you!!!
@debsid
Praying for you.