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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?
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@tjk that is a great story. Do you mind sharing what your mutations were? The old wanna-be researcher in me is looking for survivors that share my KRAS12D and TP53 mutations. My reading research has shown that if you’re a cancer cell, these 2 work very well together in your favor. My next step, for future use, is to find a clinical trial that addresses these 2 mutations.
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1 ReactionMarch 28th 2021
Started stage 4, later reconsidered was 3.
Had chemo, radiation& wippel surgery. Just went from 3 month scans to 6. I have no markers so the scan is the only way of cking. I am feel extremely lucky since all is well. Except for the usual digestive issues due to the whipple etc I am doing well.
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4 ReactionsHas any one found an alternative to Creon?
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1 ReactionI have taken Zenpep. There are, I think, several other FDA approved alternatives.
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1 ReactionHello @highlea and welcome to Mayo Connect. I appreciate hearing of your good response to treatment for pancreatic cancer. As you were originally diagnosed in 2021 you seem to have done well with the treatments provided.
You say that you have digestive issues due to the Whipple. How are you managing those issues currently?
There are five Rx pancrealipase products in the US with Creon being the most frequently prescribed. The others are Zenpep, Viokace, Pertzye and Pancreaze. There are many OTC brands but they are not enteric coated for timed release and the lipase enzyme activity which is the most important enzyme is significantly less than in the RX versions. The two most recommended OTC brands by Registered Dietitians are Vital Nutrients and Digest Gold.
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