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.

becklynne1960 | @becklynne1960 | May 19, 2022

In reply to @rmayo "My level started at 340,000 in May 2021. May 2022 is at 40." + (show)

Wow, that is awesome. Have you been through treatments and surgery?

rmayo | @rmayo | May 19, 2022

In reply to @becklynne1960 "I have just recently found out that I have a mass on my pancreas. My CA19-9..." + (show)

My level started at 340,000 in May 2021. May 2022 is at 40.

bb21 | @bb21 | Jan 22, 2022

In reply to @treadmillann "Hello, I was diagnosed with pancreatic cancer in April 2019, had whipple surgery in May 2019...." + (show)

I was on a clinical trial that caused some intestinal issues and Creon was not really helping. I use Galvescon which does help immediate issues. A friend did research with drugs for Melanoma and they found that increasing glycine in the diet helped with treatment and inflammatory issues. I now make my own bone broth and drink every day and use in cooking. It seems to help me and besides it is soothing. You can also buy bone broth, chicken or beef.

bb21 | @bb21 | Jan 22, 2022

In reply to @colleenyoung "Hi @amomynous, A family history of genetic syndromes may increase pancreatic cancer risk, including a BRCA2..." + (show)

I found that genetic testing helped me feel better for my family. I have a rare Pan Ca tumor genotype, KRAS G12C, but it is not hereditary. So glad for my family now and future generations.

bb21 | @bb21 | Jan 22, 2022

Did they order a CA19-9 level?

raff | @raff | Jan 21, 2022

My husband was diagnosed on January 14th after his surgery to remove a cyst on his pancreas went south. Too much bleeding from blood vessels and I suppose all the images were thought to be the cyst and not a giant mass. Don’t know the stage yet. Pet scan scheduled but can’t start treatment until the staples from this surgery come out next week. He had pancreatitis a couple times years ago. In hind sight, that along with diabetes diagnosis and gall bladder removal should have alerted at least one medical professional to look more closely at his pancreas.

vherzog777 | @vherzog777 | Dec 23, 2021

In reply to @colleenyoung "Dr. Truty at Mayo Clinic was a pioneer in this approach of chemo before surgery in..." + (show)

Thank you!!!!

Colleen Young, Connect Director | @colleenyoung | Dec 23, 2021

In reply to @vherzog777 "They want to start him on an aggressive chemo treatment to try to shrink the tumor...." + (show)

Dr. Truty at Mayo Clinic was a pioneer in this approach of chemo before surgery in tumors that were in former times considered in operable. You can read more about Dr. Truty and this treatment approach in various articles. Here's the most comprehensive one written for medical professional:
- 3 factors associated with improved outcomes for individuals with pancreatic ductal adenocarcinoma https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/3-factors-associated-with-improved-outcomes-for-individuals-with-pancreatic-ductal-adenocarcinoma/mac-20463202

He explains in layman's terms in this video

I recommend contacting Mayo Clinic right away. They may suggest coming to Mayo or to work with your local hospital for chemo and then to come to Mayo Clinic for surgery. You have options. Here are the contact numbers for all 3 Mayo Clinic locations. http://mayocl.in/1mtmR63

I'm sure other members like @cindysavant @susan2018 @marvinjsturing @mayojoe7 @kjrita @buckslayer @chemobile @colorafo19 will have some first hand experiences to share with you.

vherzog777 | @vherzog777 | Dec 23, 2021

In reply to @colleenyoung "I'm sorry to hear this, vherzog. You're right that it is good that it was caught..." + (show)

They want to start him on an aggressive chemo treatment to try to shrink the tumor. If they can shrink it they will send him to Little Rock to remove it. It’s not a cancer center I don’t think but is a good hospital. I don’t believe they have the technology here even in Little Rock to help him if the tumor doesn’t shrink or doesn’t shrink enough. I’m trying to think ahead. At what point would I get ahold of Mayo for a second opinion? Now or if they tell me they can’t operate?

Colleen Young, Connect Director | @colleenyoung | Dec 23, 2021

In reply to @vherzog777 "Found out today. Stage 3 😢. At least it hasn’t spread but is wrapped around the..." + (show)

I'm sorry to hear this, vherzog. You're right that it is good that it was caught before it spread. Do you know what treatment is being suggested yet? Did they discuss going to a specialized cancer center?