1. < Pancreatic Cancer
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.

lvtexas | @lvtexas | Oct 1, 2022

@ken240 Along with this cancer, I have Crohn’s disease and GERD. So I am very nervous about D always, and reflux issues are treated with Pepcid (high dose) at night and another med before morning meal - so far that has stayed in check. I’m very nauseated so food isn’t high on my list. I am officially day 2 so I will be on the lookout for D. Thanks for sharing. Be blessed and heal.

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1 reply
ken240 | @ken240 | Oct 1, 2022
In reply to @lvtexas "@ken240 I had my first Folferinox yesterday. When did you get your digestive symptoms? Right away?..." + (show)
@lvtexas

@ken240

I had my first Folferinox yesterday. When did you get your digestive symptoms? Right away? How are you treating them?
Thanks.

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Hi, my digestive issues cropped up two days after initial treatment. I had diarrhea and I treated it with Imodium, but then I was constipated for two days. I also took a Zofran for nausea, and not sure if that drug affected my system. Also had two bouts of heartburn in the ten days since the treatment. Doctor put me on Omeprazole. Trying to eat small portions more often, and that helps.

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lvtexas | @lvtexas | Oct 1, 2022
In reply to @colleenyoung "Peggy, I hope that you were eventually able to connect with the monthly zoom group eventually...." + (show)
@colleenyoung

Peggy, I hope that you were eventually able to connect with the monthly zoom group eventually. If not, please try again at the next meeting on Oct 25.
See details here: https://connect.mayoclinic.org/event/pancreatic-cancer-support-group-4/

If there are problems with connecting, please email the social work who facilitates the group:
Raeane Veralrud, MSW
Email: veralrud.raeane@mayo.edu

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I couldn’t connect either. It just circled around on Zoom.

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1 reply
lvtexas | @lvtexas | Oct 1, 2022
In reply to @ken240 "Hi, I had a distal pancreatectomy and splenectomy for an IPMN. There was an adenocarcinoma that..." + (show)
@ken240

Hi, I had a distal pancreatectomy and splenectomy for an IPMN. There was an adenocarcinoma that was removed. I am stage 1b and had my first Folferinox chemo on September 14. Digestive system is out of whack. Trying to get back regular.

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@ken240

I had my first Folferinox yesterday. When did you get your digestive symptoms? Right away? How are you treating them?
Thanks.

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1 reply
ken240 | @ken240 | Sep 30, 2022

Hi, I had a distal pancreatectomy and splenectomy for an IPMN. There was an adenocarcinoma that was removed. I am stage 1b and had my first Folferinox chemo on September 14. Digestive system is out of whack. Trying to get back regular.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 30, 2022
In reply to @snafuchris01 "My mother is the one with pancreatic cancer - I am her primary caregiver. She doesn't..." + (show)
@snafuchris01

My mother is the one with pancreatic cancer - I am her primary caregiver. She doesn't engage online but I do. My mom is 92 years old with prior open heart surgery. The doctor diagnosed her with a pancreatic tumor, and although he didn't give the exact stage, he said it was early because it had not metastasized and he thought she had a year to live, probably because of her age. I'm wondering what to expect as this disease progresses. She is post-hospital 5 days - they put an untreated stent in her to open the bile duct. She is still slightly nauseated but her jaundice is about gone and her itching has stopped. She has several of us kids that she will live with and we can provide great care for her. Can anyone tell me what to expect next, and then next, and then next? And when, and then when, and then when? I know she will be candid with me if she starts experiencing pain, but I don't know much about how quickly the cancer progresses. Anyone with some insight?

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@snafuchris01, how the cancer will progress is difficult to answer. Every person is different. Her doctors who know more specifically about her health status and details of the tumor may be able to give some guidance.

Is she currently in the care of a palliative care team? Palliative care can be so helpful, not only to keep the patient comfortable, but also to support the family along the way. You can learn more in this discussion:
- Palliative Care: What is it? How do I get it? https://connect.mayoclinic.org/discussion/palliative-care-1/

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 30, 2022
In reply to @beachdog "@aprilg You've already identified the key to sustaining the battle, HOPE. Without hope, all is lost...." + (show)
@beachdog

@aprilg
You've already identified the key to sustaining the battle, HOPE. Without hope, all is lost. My wife, with my unrelenting hope and support battled pancan for 3 years. At the end of August we went to the ER to get admitted because she had an intestinal blockage and needed to start IV nutrition. After getting a new CT scan, the hospitalist comes in and says there's nothing we can do, go home, we'll get you started with hospice. I physically removed him from the room and screamed right in his face to never come back. Until that moment, we certainly had our doubts but never succumbed to them. We did get admitted by our oncologist and she rallied when TPN started. Halfway through our 11 day stay, who shows up but Dr death and he orders the TPN stopped. It took 2 shift changes for a sympathetic charge nurse to ignore the Drs orders and she restarted the TPN. This process repeated itself 2 more when my wife decided to give up. Without hope there's no survival. My wife passed on 9/14 fighting to the last moment.

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@beachdog, I send you peace and strength as you begin a different journey of loss and grief. If it is right for you, please know that there is a support group here:
- Loss & Grief https://connect.mayoclinic.org/group/loss-grief/

Through the time caring for your wife, you supported many other members living with pancreatic cancer and have added to the knowledge and experiences of the group. I'm grateful for your contributions. Thank you.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 30, 2022
In reply to @myacim "Hi~ I am trying to connect to the Pancreatic Cancer Support Group, which is scheduled for..." + (show)
@myacim

Hi~
I am trying to connect to the Pancreatic Cancer Support Group, which is scheduled for now, but it just says it is waiting for the host to start the meeting. I'm not sure if it is cancelled or if there is a problem on my end. I Zoomed yesterday and it was working fine.
Any tips?
Thank you~
Peggy

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Peggy, I hope that you were eventually able to connect with the monthly zoom group eventually. If not, please try again at the next meeting on Oct 25.
See details here: https://connect.mayoclinic.org/event/pancreatic-cancer-support-group-4/

If there are problems with connecting, please email the social work who facilitates the group:
Raeane Veralrud, MSW
Email: veralrud.raeane@mayo.edu

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1 reply
dramagrandma1 | @dramagrandma1 | Sep 29, 2022
In reply to @aprilg "@dramagrandma1 I wouldn’t say I’m patient, I just didn’t take it seriously in the beginning. I’m..." + (show)
@aprilg

@dramagrandma1
I wouldn’t say I’m patient, I just didn’t take it seriously in the beginning. I’m not even mad at anyone about it. It was my decision not to push for quicker action. Now, things are addressed a lot quicker. :- ) Thanks for your response.

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seriously, i sense you are one of those who is going to have luck on your side, after surmising what you write.
just sayin'

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aprilg | @aprilg | Sep 29, 2022
In reply to @kimberbee "Hi - My name is Kim and I'm here for my mom. After two months of..." + (show)
@kimberbee

Hi - My name is Kim and I'm here for my mom. After two months of tests and 2 inconclusive biopsies with a third conclusive (finally!!) biopsy, Mom has been diagnosed with adenosquamous pancreatic cancer. It hasn't spread outside the pancreas but it is abutting two arteries (veins?) which is concerning. Plus we know she has an aggressive variant of pancreatic cancer so we know we have along, tough road ahead - and we learn more about it every. single. day. Mom is a strong, amazing lady and my dad and I will be by her side helping her every step of the way. Anyway, Mom is about to start chemotherapy rounds of Folfirinox this week. So my biggest question at the moment (I'm sure I'll have tons more very soon) is 1) what types of side affects she should expect after chemo treatments and 2) what we can do to help ease any of the symptoms - ie, certain foods that will relieve the nausea, etc. If anyone has any suggestions, I'd appreciate it. Thanks so much in advance. And peace, love and light to all.

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@kimberbee
I did 10 rounds of FOLFIRINOX. They pump me full of anti nausea drugs on day one and it helps tremendously. I do A LOT of supplements to offset the side effects of the Oxaliplatin, although we just stopped it. It can cause neuropathy and cold sensitivity along with sores in the mouth. Remember it is cumulative. I didn’t start to experience the neuropathy until #9 but the cold sensitivity was from the 1st session. I have knitted gloves for the fridge and ski gloves for the freezer. That’s what stands out most for me.

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