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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.

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)
@colleenyoung

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
https://youtu.be/Rjkbi6DA8as

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.

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Thank you!!!!

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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.

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bb21 | @bb21 | Jan 22, 2022

Did they order a CA19-9 level?

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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)
@colleenyoung

Hi @amomynous, A family history of genetic syndromes may increase pancreatic cancer risk, including a BRCA2 gene mutation, Lynch syndrome and familial atypical mole-malignant melanoma (FAMMM) syndrome. Keep in mind that familial pancreatic cancer accounts for only 10% of all pancreatic cancers. You might find this article of interest.

- Mayo Clinic discovers gene mutations linked to pancreatic cancer, calls for expanded testing https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-discovers-gene-mutations-linked-to-pancreatic-cancer-calls-for-expanded-testing/

Has your family considered genetic testing? Would that information calm you or increase the worry?

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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.

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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)
@treadmillann

Hello, I was diagnosed with pancreatic cancer in April 2019, had whipple surgery in May 2019. In the report they are calling this Ampullary cancer but still took 1/2 of my pancreas along with parts of what goes along with this type of surgery. I have had a terrible reaction to Creon, switched to over the counter Papaya Enzymes. They also became a problem so now fighting this with foods that build digestive enzymes but still having issues with stool problems. I feel very lucky compared to marvinjsturing, hang in there Marvin. Does anyone have any suggesting on how to handle my issue?

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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.

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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)
@becklynne1960

I have just recently found out that I have a mass on my pancreas. My CA19-9 level is 1842. Has anyone had levels this high and it not be cancer.

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

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becklynne1960 | @becklynne1960 | May 19, 2022
In reply to @rmayo "My level started at 340,000 in May 2021. May 2022 is at 40." + (show)
@rmayo

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

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

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rmayo | @rmayo | May 19, 2022
In reply to @becklynne1960 "Wow, that is awesome. Have you been through treatments and surgery?" + (show)
@becklynne1960

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

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22 rounds of chemo over the past year. Just dropped oxaliplatin. Panc tumor reduced greatly and liver mets have reduced greatly in size and number. I have tolerated chemo very well.

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2 replies
becklynne1960 | @becklynne1960 | May 19, 2022
In reply to @rmayo "22 rounds of chemo over the past year. Just dropped oxaliplatin. Panc tumor reduced greatly and..." + (show)
@rmayo

22 rounds of chemo over the past year. Just dropped oxaliplatin. Panc tumor reduced greatly and liver mets have reduced greatly in size and number. I have tolerated chemo very well.

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I have had 8 chemo treatments and now doing 6 weeks of radiation and hopefully surgery around August. I haven't really had terrible side effects from chemo or radiation. Some nausea but mostly just exhaustion. I pray that your numbers continue to improve.

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bb21 | @bb21 | May 19, 2022
In reply to @rmayo "22 rounds of chemo over the past year. Just dropped oxaliplatin. Panc tumor reduced greatly and..." + (show)
@rmayo

22 rounds of chemo over the past year. Just dropped oxaliplatin. Panc tumor reduced greatly and liver mets have reduced greatly in size and number. I have tolerated chemo very well.

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did you have the mass removed or biopsied? If so what was your genetic results or the genome found? Most are KRAS but there are various mutations of that. Some are much more responsive to treatment than others. Ask your physician if he knows please. Quite helpful information.

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