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?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

I’ve got 3 more chemo treatments and then Dr wants 3 weeks of daily radiation. Can anyone tell me what the radiation is like?

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I had chemotherapy only, no radiation. I was cancer was originally diagnosed stage 3, borderline resectable. The intention of the up-front chemotherapy was to shrink the tumor, which was in close proximity to blood vessels. I was treated and had surgery at Johns Hopkins, where I work. I had an open Whipple surgery performed by Dr. Jin He. Dr. He also performs robotic Whipple surgeries, but due to a number of confounding factors, the decision in the end was to do an open surgery. Recovery from the incision has been one of the main issues that I have had to deal with post-surgery. It would be interesting to know how things would have been different with the robotic option, not that I ever what to go through another Whipple.

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@mmatunis

I was diagnosed with pancreatic cancer in June, 2022. My diagnosis was triggered by a bout of jaundice. A CT scan revealed a hypodense dense mass in the head of the pancreas and an occluded bile duct. Two ECRP surgeries were needed to successfully insert a stent and open the duct. I had 12 rounds of FOLFIRINOX chemotherapy starting in July and ending at the end of December. I then had a Whipple surgery on January 30th. All margins of resection were clean, so I am considered “cancer free” for all immediate intents and purposes. I’m 10 weeks out from surgery and doing fairly well, all things considered. The journey has not been easy and there are many tales of trials and tribulations to share. But I am in a good place now.

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mmatunis,

Chemo (CHT) only, or chemo then radiation/chemo (CRT)?

Which hospital/center and who was surgeon?

Open Whipple or laparoscopic?

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I was diagnosed with pancreatic cancer in June, 2022. My diagnosis was triggered by a bout of jaundice. A CT scan revealed a hypodense dense mass in the head of the pancreas and an occluded bile duct. Two ECRP surgeries were needed to successfully insert a stent and open the duct. I had 12 rounds of FOLFIRINOX chemotherapy starting in July and ending at the end of December. I then had a Whipple surgery on January 30th. All margins of resection were clean, so I am considered “cancer free” for all immediate intents and purposes. I’m 10 weeks out from surgery and doing fairly well, all things considered. The journey has not been easy and there are many tales of trials and tribulations to share. But I am in a good place now.

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I find I have learned something from every story that is shared in the forum. Hope the journey goes smoothly for you.

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@thereseinrochester

Hello. My husband has pancreatic cancer and has undergone his first round of chemotherapy. I just want to read about other people’s experiences and maybe ask questions in the future. Thanks for having this available.

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Welcome, and bey wishes to you both on this journey. There are lots of us here who have experienced chemo, and each have our own story. I would encourage your husband to speak with the chemo nurses about any (and I mean any) concern, side effects or anything “new” - they often have tips to help deal with them, know what is significant and will advise dr accordingly. Try to rest, eat healthy, remain positive - attitude helps a lot!. It is not easy, but for me, it was worth it to buy time with my family. I had Stage 3, diagnosed Jan 2021. Whipple surgery followed by 12 folfirinox treatments. So far, so good more than 2 years later. You can do this!

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@beachdog

Catherine, we will be praying for you through the surgery and your treatments.

My wife was diagnosed at stage 3 in July 2019. She started with 9 cycles of Folfirinox, followed by SBRT (targeted raditation), modified Appleby procedure (everyone knows Whipple, no one knows Appleby except a few top specialists) and then recuperation for almost a year. Unfortuantely her recuperation was during covid and the isolation was heaped on top of the issues with recuperation. A new tumor was discovered in the ovary (skip metastasis) in February 21 and it was removed in March followed by Gemcitibine?Abraxane/Cisplaten. She just compelted her 12 scheduled treatment but now faces additional treatments until her numbers or scan put her in the clear.

I wish I could tell you that there won't be tremendous hurdles, but you have more support than we do. We have no children either and no nearby family and due to covid, even well intentioned friends haven't been able to do much. Everyone's journey is going to be different. My wife's has been extremely rough. Everything from ongoing eating/nutrition to chemo side effects to more side effects from the meds treating the side effects. Others we communicate with have a much easier time. Hopefully you will be on the easier path.

You are correct that this will be extremely difficult for your husband. Our marriage was always close to 50/50 as far as duties and responsibilities. Since her treatments began, it has been more like 95/5 and it is exhausting. But, I do it for her. I constantly remind myself not to complain because I am the healthy, strong partner and nothing that I have experienced is as difficult as what she has been facing.

Good luck and bless you and your family.

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Hi, I’m sorry to hear this ordeal with your wife’s cancer. Her situation sounds like my sister who had a Totalpancreatectomy done by Dr. truty back in December 2021 nine months later it was metastasized to her ovaries and she had her ovaries taken out in September 2022. She is having a lot of difficulties putting on weight she has lost 10 KG since the last surgery and at present she only weighs 39 kg on a 5’4 frame. I was wondering how did your wife manage her nutrition? It is so difficult to get their weight up because they need high calories, low fat, low sugar, not too much meat, but how are you supposed to do that when they need to put on weight ? I hear that sugar and meat does contribute to the cancer cell growing …damn if you do and damned if you don’t, I would appreciate if I can get some advice from you. Thank you in advance.!

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@thereseinrochester

Hello. My husband has pancreatic cancer and has undergone his first round of chemotherapy. I just want to read about other people’s experiences and maybe ask questions in the future. Thanks for having this available.

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Hello. I have just finished nine chemo treatments and am prepping for the whipple on 4/24. Everyone that I have spoken with has had a different experience. For me, the chemo side effects became slightly worse with each treatment. It is nice not to have any before the surgery. I found it helpful to reach out to pancreatic survivors and hear their story. I have also found it very helpful to be in the moment as much as possible. I think my wife has had a harder time than me. She has been an angel. Best of luck to you all!

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Hello. My husband has pancreatic cancer and has undergone his first round of chemotherapy. I just want to read about other people’s experiences and maybe ask questions in the future. Thanks for having this available.

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Brushing taken when I had the ERCP to insert. Stent came back negative for malignancy, yet I actually had stage 3 pancreatic cancer in the head of the pancreas. Location of tumour is an important factor. Don’t rely on only ERCP findings

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