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Moderator

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.

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lisn | @lisn | May 23, 2024

I feel the exact same way, I'm never afraid or embarrassed to ask any questions as it relates to my husband's journey. Every single person here has been so helpful. This group has been a source of comfort and knowledge and I'm SO grateful to everyone.

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gretchenb | @gretchenb | May 22, 2024

Hello,
My husband was diagnosed in April of 2023. We thought it was stage II at first but when they went in to do the distal surgery they found studding in the liver. They aborted surgery and he is fighting the disease with Chemotherapy. He was able to complete 18 cycles of FLOFIRINOX, 8 cycles of FLOFIRI, and has now transitioned to Gem/Abrax- first cycle today. His main tumor has remained stable this whole time, but he continues to get new liver spots. He is having a consultation for the Y90 procedure tomorrow.

I am always seeking out new information to help us prepare for all the ups and downs that have come with this diagnosis. I never have a dumb question anymore, not when it is about my husband's health and healing. This is such a scary disease, but we find there are so many positive stories around survival too, we seek those experiences out and it helps us keep our spirits and fighting drive strong.

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st | @sthakral | May 19, 2024
In reply to @colleenyoung "@sthakral, treatments can be harsh. Did your dad's doctors talk to your family about palliative care?..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@sthakral, treatments can be harsh. Did your dad's doctors talk to your family about palliative care? Palliative can focuses on comfort and symptom management. Let me know if you want more information if you haven't heard of palliative care.

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Hi Colleen,
Palliative care is what the doctor recommended and what we are doing. We are just trying to keep him as comfortable as possible. But he’s getting weaker by the day and needs assistance with everything. I know he hates that as he is used to being self reliant and active.

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Colleen Young, Connect Director | @colleenyoung | May 19, 2024
In reply to @sthakral "Hi My 88 year old dad has been diagnosed with pancreatic cancer. He had jaundice and..." + (show)
Profile picture for st @sthakral

Hi
My 88 year old dad has been diagnosed with pancreatic cancer. He had jaundice and that’s what led to a series of tests that revealed the cancer. He’s been healthy and active all hi life but doctors recommendation now is to avoid any harsh treatment (because he’s too weak to take it) and just best manage his symptoms. He has extreme fatigue and needs assistance for everything and has swelling in his legs due to the jaundice. Any advice on symptom management techniques or drugs would be much appreciated

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@sthakral, treatments can be harsh. Did your dad's doctors talk to your family about palliative care? Palliative can focuses on comfort and symptom management. Let me know if you want more information if you haven't heard of palliative care.

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1 reply
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marienewland | @mnewland99 | May 19, 2024
In reply to @kjrita "Hello @steffi2 , I am sorry to hear about your pancreas cancer diagnosis. I am a..." + (show)
Profile picture for kjrita @kjrita

Hello @steffi2 , I am sorry to hear about your pancreas cancer diagnosis. I am a five + year survivor that worked with Dr Truty at Mayo, Rochester. His plan for me included Folfirinox, and then Gemcitabine/Abraxane, which was followed by radiation and then, surgery. I had a pancreatectomy on 10/23/18. I am cancer free and am fully recovered. I now wear a OmniPod 5 insulin pump and Dexcom G6 CGM. They communicate with each other and it helps me avoid blood sugar lows. You could check out my blog which is more for emotional support for those walking through a cancer diagnosis to healing: RitaAnn.org/blog Peace to you, Rita Ann

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That’s wonderful news kjrita! I always like to hear about survivors! Which mutation did you have? ATM, KRAS12D?

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steffi2 | @steffi2 | May 19, 2024
In reply to @kjrita "Hello @steffi2 , I am sorry to hear about your pancreas cancer diagnosis. I am a..." + (show)
Profile picture for kjrita @kjrita

Hello @steffi2 , I am sorry to hear about your pancreas cancer diagnosis. I am a five + year survivor that worked with Dr Truty at Mayo, Rochester. His plan for me included Folfirinox, and then Gemcitabine/Abraxane, which was followed by radiation and then, surgery. I had a pancreatectomy on 10/23/18. I am cancer free and am fully recovered. I now wear a OmniPod 5 insulin pump and Dexcom G6 CGM. They communicate with each other and it helps me avoid blood sugar lows. You could check out my blog which is more for emotional support for those walking through a cancer diagnosis to healing: RitaAnn.org/blog Peace to you, Rita Ann

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Thank you, Rita Ann. It’s good to know there are other paths to long term survival besides the simplistic plan offered to me.

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kjrita | @kjrita | May 19, 2024
In reply to @steffi2 "Retired MD here. Hello to all you brave souls. My journey began 3 days ago when..." + (show)
Profile picture for steffi2 @steffi2

Retired MD here. Hello to all you brave souls. My journey began 3 days ago when I went to the emergency room with pain, abdominal mass and jaundice. The surgeon was sure it was pancreatic adenocarcinoma the first time I saw her. Biopsy yesterday via endoscopy preliminary results showed malignancy. Waiting for treatment plan. Hoping I will be eligible for Whipple although I know it will be awful.

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Hello @steffi2 , I am sorry to hear about your pancreas cancer diagnosis. I am a five + year survivor that worked with Dr Truty at Mayo, Rochester. His plan for me included Folfirinox, and then Gemcitabine/Abraxane, which was followed by radiation and then, surgery. I had a pancreatectomy on 10/23/18. I am cancer free and am fully recovered. I now wear a OmniPod 5 insulin pump and Dexcom G6 CGM. They communicate with each other and it helps me avoid blood sugar lows. You could check out my blog which is more for emotional support for those walking through a cancer diagnosis to healing: RitaAnn.org/blog Peace to you, Rita Ann

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3 replies
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steffi2 | @steffi2 | May 19, 2024

Thanks, Colleen. Borderline resectable. FOLFIRONOX. CT 2-3 months. Whipple if tumor lifts away from blood vessels.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 18, 2024
In reply to @steffi2 "Retired MD here. Hello to all you brave souls. My journey began 3 days ago when..." + (show)
Profile picture for steffi2 @steffi2

Retired MD here. Hello to all you brave souls. My journey began 3 days ago when I went to the emergency room with pain, abdominal mass and jaundice. The surgeon was sure it was pancreatic adenocarcinoma the first time I saw her. Biopsy yesterday via endoscopy preliminary results showed malignancy. Waiting for treatment plan. Hoping I will be eligible for Whipple although I know it will be awful.

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@steffi2, I add my welcome. What have you learned about your treatment plan? Any update?

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wjk | @wjk | May 17, 2024
In reply to @stageivsurvivor "Warren, I sent you a private message related to the inquiry on Berberine. Please check your..." + (show)
Profile picture for stageivsurvivor @stageivsurvivor

Warren,

I sent you a private message related to the inquiry on Berberine. Please check your connect.mayoclinic account in-box and let me know about the proposal by private message.
Steven

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Got it. Thank you. I'll reply to your private note shortly.

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