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.

azsunshine7 | @azsunshine7 | Dec 6 5:02pm

In reply to @yellie "@azsunshine7 all great ideas. Thank you." + (show)

@yellie I also completed 12 cycles of FOLFIRINOX.

yellie | @yellie | Dec 6 7:28pm

His oncologist recommended ending his Neoadjuvant chemo at 9, initially he was to get 12, it was rough. Instead they recommended he get the Whipple. His surgery was 12 hours, complicated by inflammation and pancreatitis. He currently has a A type pancreatic fistula and still has his drain. He was fortunate to have an operable tumor, just had no idea what a challenge the recovery would be. He is to be reassessed by surgery in a couple weeks and get a repeat CT. He sees Oncology in February with another CT then possibly more chemo with Tumor information. It is so helpful to hear others experience and know that it is navigable and survivable.

azsunshine7 | @azsunshine7 | Dec 6 7:46pm

In reply to @yellie "His oncologist recommended ending his Neoadjuvant chemo at 9, initially he was to get 12, it..." + (show)

Hi @yellie,

Your husband is strong and courageous!

It is a lot to handle, and honestly, recovery is tougher than I ever anticipated. I never imagined I’d have to undergo a surgery as tough as the Whipple.

Before the surgery, I couldn’t even begin to picture what recovery would feel like. The pain and the struggle to move around have been some of the hardest challenges I've faced in my life. And having to take the drain home with me was just another constant pain.

They say recovery can take anywhere from 3 to 6 months, so it’s definitely a long road ahead.

Please send my best to him. I hope he’s doing well and that he recovers quickly!

Take care.

yellie | @yellie | Dec 6 9:22pm

In reply to @azsunshine7 "Hi @yellie, Your husband is strong and courageous! It is a lot to handle, and honestly,..." + (show)

@azsunshine7 I will, thank you for sharing your experience and your own courage too! It is so helpful to know how far you have come. It gives us hope. I know it helps him to hear the shared experiences.

azsunshine7 | @azsunshine7 | Dec 7 11:27pm

In reply to @yellie "@azsunshine7 I will, thank you for sharing your experience and your own courage too! It is..." + (show)

@yellie
You are welcome!

Keep us posted and hope to see you soon.

piedmontsteve | @piedmontsteve | Dec 10 12:40pm

Hi everyone! It’s Steve from Sunset Beach, NC. I was diagnosed with Stage 4 Pancreatic Cancer in June of 2021. I did one year of aggressive chemo and my response was so good that I was able to have a distal pancreatectomy at Duke Cancer Center in September of 2022. I was off chemo with clear scans for a year when the cancer returned to my peritoneal cavity. I’ve been back on chemo since October of 2023. I was at Mayo last week to have some tests and a diagnostic laparoscopy to help determine next steps.
I’m hoping for a long chemo holiday.

sorbiodunum | @sorbiodunum | Dec 10 1:55pm

My 73 year old husband has just been diagnosed with adenocarcinoma in the tail (distal) of the pancreas. It was 44mm with no visible spread and clear lymph nodes. He has no symptoms (weight loss, jaundice etc.) Discovered incidentally during a CT Scan for a minor fall off his bicycle. Accepted for surgery (not whipple) dependent upon success of Chemotherapy (Folfirinox..4 rounds). Otherwise the picture of health for an active man of his age.

Turkey, Volunteer Mentor | @tomrennie | Dec 11 9:55am

In reply to @piedmontsteve "Hi everyone! It’s Steve from Sunset Beach, NC. I was diagnosed with Stage 4 Pancreatic Cancer..." + (show)

@piedmontsteve Hi Steve and welcome to Mayo Connect. I am sorry to hear about the reoccurrence to your peritoneal cavity. What kind of pancreatic cancer did you have? Please share the results of your recent tests and laparoscopy, if you are comfortable, and next steps. We all learn from each other's journeys. Thank you.

Turkey, Volunteer Mentor | @tomrennie | Dec 11 10:00am

In reply to @sorbiodunum "My 73 year old husband has just been diagnosed with adenocarcinoma in the tail (distal) of..." + (show)

@sorbiodunum Hi and welcome to Mayo Connect. Sorry to hear about your husband's diagnosis. Fortunately, it seems to have been diagnosed early, and he is otherwise the picture of health. When does he start Folfirinox? Do you two have any concerns at this point?

sorbiodunum | @sorbiodunum | Dec 11 11:22am

In reply to @tomrennie "@sorbiodunum Hi and welcome to Mayo Connect. Sorry to hear about your husband's diagnosis. Fortunately, it..." + (show)

@tomrennie We will begin next week. Unsure of day yet but ready to go. The anxiety of diagnosis and tell friends has been only bearable and have concerns about loss of appetite and eating. All very new for us. Looking forward to encouragement, helpful tips and shared experiences from this group. Our team at our hospital here in Ottawa Canada sounds wonderful and supportive. Thank you for support for me, his caregiver and wife of 43 years.