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?

Thank you so much! I found it very hopeful! I need to read stories like your!

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@susan2018

May I ask who your appointments are with?

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So far Dr Pearson. They said they will make more appts as it gets closer.

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@susan2018

May I ask who your appointments are with?

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Dr Pearson

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In reply to @maryvallis512 "Dr Pearson" + (show)
@maryvallis512

Dr Pearson

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Same for my husband. Initial evaluation was with his nurse practitioner, then scheduled further. I’ll be thinking of you.

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@marvinjsturing

Hi, everyone. I was diagnosed with pancreatic cancer on May 9, 2014. My Whipple was performed by Dr. Farnel at Mayo in Rochester on June 5, 2014. The surgery took 8 1/2 hours. The doctor removed most of my pancreas, part of my stomach and my duodenum. What was left of my pancreas was so bad that the doctor didn't even connect it back into my digestive system. I was Staged at 2b because cancer was found in 1 of the 64 lymph nodes that were removed. Surgery was followed by 6 months (18 infusions] of gemcitabine or gemzar. My last treatment was December 30, 2014. I was looking forward to a new year with out any treatments only to discover that I had a very rare reaction to the chemo and developed atypical Hemolytic Uremic Syndrome. I spent the next 10 months going to Mayo for treatment. By the time they got the aHUS under control, my kidney function was down to 15%. In order to be listed on the kidney transplant list, I had to be cancer free for 5 years. That happened last June. My sister had offered to be a donor for me. Two weeks before she was scheduled for her testing, she was diagnosed with mantel cell lymphoma. She has now finished her chemo and is working on getting a stem cell transplant. I am not yet on dialysis. As far as I know, I do not have anyone working on becoming a donor so I am now waiting for a deceased donor. At this time I am grateful just to be alive. The biggest issue I deal with on a daily basis is fatigue. I typically need a nap in the afternoon. Because in essence I have no pancreas I am treated as a Type I diabetic and have to take Creon every time I eat. Other than that, I have a pretty good quality of life. I often tell people that other than diabetes, pancreatic cancer and chronic kidney disease, I am in perfect health!

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Boy, you and your family have been through the ringer. Praying a kidney donir if found and it helps the fatigue. We are getting closer to a whipple but it will be a new way of life. How exciting to contemplate years rather than months though. Blessings to you! Believing in healing.

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@susan2018

May I ask who your appointments are with?

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Dr. Pearson

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Hello @maryvallis512, I would like to add my welcome to Connect along with @susan2018 and other members. I'm glad to see that you found this discussion and introduced yourself. I understand how such a diagnosis can turn your world upside down. You mentioned you have an upcoming appointment in Rochester. I'm not sure if you have been to the Rochester Mayo Clinic Campus before so thought I would share a few links that you may find helpful.

Map of downtown Rochester Accomodations:
http://318commons.com/main/wp-content/uploads/2015/03/Dowtown-subway-and-skyway-map.pdf
Rochester, MN Charitable Lodging
https://www.experiencerochestermn.com/mayo-clinic/hotels/charitable-lodging/
Mayo Clinic Patient Video Guides – YouTube Videos: http://bit.ly/2o3jvMj

I thought you might also find the following Sharing Mayo Clinic story uplifting…Aggressive Approach to Pancreatic Cancer Yields Outstanding Outcome: https://sharing.mayoclinic.org/2020/02/05/aggressive-approach-to-pancreatic-cancer-yields-outstanding-outcome/

@maryvallis512 if you can, will you let us know how your appointment on Wednesday goes?

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@debsid

Boy, you and your family have been through the ringer. Praying a kidney donir if found and it helps the fatigue. We are getting closer to a whipple but it will be a new way of life. How exciting to contemplate years rather than months though. Blessings to you! Believing in healing.

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@debsid Last December, I was diagnosed with a recurrence of pancreatic cancer. Last week I received my official letter from Mayo. My name has been removed from the kidney transplant list. If they can get rid of the cancer (it doesn't look promising at this time) I have to be cancer free for 5 years before I can get back on the list.

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@marvinjsturing

@debsid Last December, I was diagnosed with a recurrence of pancreatic cancer. Last week I received my official letter from Mayo. My name has been removed from the kidney transplant list. If they can get rid of the cancer (it doesn't look promising at this time) I have to be cancer free for 5 years before I can get back on the list.

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I'm sorry. Can you do any studies? Praying for you.

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@maryvallis512

Thank you for replying Susan. The waiting to get started is so hard. We have our first appt next Wednesday in Rochester. I have such a hard time being hopeful.

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Hi Mary, The waiting is the hardest part. We came to Mayo Phoenix for a second opinion but my hubby got a bleed that landed him in the hospital on the way out of town. We were meant to stay and are so happy with our care team. Praying for you. Debbie

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@debsid

I'm sorry. Can you do any studies? Praying for you.

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@debsid Mayo has contacted me about a study that is at stage 2 of the study. My oncologist told me that means they are done testing on animals and are trying to determine what dosages to use. When they finish stage 2 testing, they will then test the effectiveness of the procedure. The way I understand it, you are given a drug that makes your body hyper sensitive to light. They then use an endoscope to shine a laser on your tumor. The last i heard, this study was on hold due to covid.

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Interesting. Thank you! All my best

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@maryvallis512, I’m thinking of you as you prepare for tomorrow’s appointments. We are no doubt both in Rochester tonight. We are still waiting for the results of his endoscopic ultrasound biopsies done yesterday. Wishing you hope and a plan.

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@maryvallis512 I’ve been thinking about you and wondering if you had your appointments at Mayo…and if you have a plan going forward?

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I am a 75 year old female. My cancer started in 1999 where I had my left kidney removed due to cancer at the Mayo Clinic in Rochester. I did quite well for several years, but in 2008 we found a tumor in the head of my pancreas. The kidney cancer had metastasized to the pancreas. I returned to Mayo Clinic and had a Whipple Surgery where they removed the head of the pancreas, my gall bladder, and the duodenum. in 2013 another tumor was found near where they had cut off the head of my pancreas. I returned to Mayo Clinic again and they cut off another inch of my pancreas to remove the tumor. In 2018 we found another tumor in the tail of my pancreas. We waited for a year to do anything as our last daughter was planning her wedding. When we learned about a treatment to kill the cancer we decided to go for it. In May of 2019 we again returned to Mayo Clinic and saw Dr Levy. He performed a Upper Endoscopic Ultrasound and saw that I actually had two tumors instead of one. He performed an Electrical Ablation to the first tumor. I returned in June and he treated the second tumor with an Electrical Ablation. I returned again in October and he treated the second tumor and felt like he had killed all the cancer. I returned in November to Mayo Clinic and they just looked around the pancreas to see if I looked clear of cancer. In August 2020 I had another CT scan and it showed that I have another tumor near the two that I had ablated in 2019. Has anyone had Kidney cancer in the pancreas and had a complete pancreatectomy? i am desperate to talk to someone that has had similar cancer that isn't pancreatic cancer. I am thinking about having a pancreatectomy but want to talk to someone who has experienced the same thing.

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