Pancreatic Cancer Group: Introduce yourself and connect with others

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.

Hello @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?

I have taken Zenpep. There are, I think, several other FDA approved alternatives.

Has any one found an alternative to Creon?

March 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.

@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.

Hello @tjk

What a great story of your journey with pancreatic cancer. I'm so glad that you found help at Mayo Clinic. You point out the necessity of finding a specialty center when dealing with cancer.

As your final surgery was in 2016, what type of follow up appointments do you have now? How are feeling?

Hello. Thank you.
Yes, I will have to check my notes as I don't always remember specific details on treatments as it's been 10 years. Reading and finally commenting on this forum has been rewarding. I guess I have always been a little private with my cancer journey but this is a great outlet to read and connect with others. I have a fantastic oncologist at Regions hospital ( Dr. Jahagirdar) in St. Paul where I was referred by Dr. Xiao Feng, my doctor at the time. I first had symptoms in Fall of 2014 and the process of getting diagnosed and treatments followed fairly quickly. I began chemo in January - February 2015 at Regions cancer center. (I need to check my notes for chemo details). Skipping ahead to July of 2015 I had unsuccessful surgery at Regions and thought that was it. Dr. Wolpert, my surgeon was great but the situation ended up being more complicated and he backed out after an hour or so. So the process started for a plan B.
Don't remember all details here either so I'll jump to January 7th 2016. I owe my life to Dr. Farnel and his amazing team at Mayo where he performed successful surgery and that is why I am alive today!

You're welcome! Great to hear. The phrase "take it one day at a time" is so true. It's difficult to wrap your head around everything so I found that just focusing on today, doing what you can and being grateful for what I do have helps.

Hello all, I'd like to know if anyone has been on Gemcitabene/Abraxane for a long time as a treatment to put them into and keep them in remission? I just completed my first cycle, and things are going in the right direction with minimal side effects. My full history below:
Scan is key. My CA19-9 was 192 before surgery on February 9, 2024, I was resectable stage 2, 3 of 26 lymph nodes were involved, some nerve involvement, but all margins were clear. My CA19-9 dropped right down to 5 after surgery, stayed around 5,86,7,8,11 all through Folfirinox. I was hopeful for a cure. Last infusion was September 13, then I had a CT scan October 2nd and darnit, 2 lesions in my liver and two tumors in the soft tissue under the skin in my belly (apparently extremely rare to have metastases to soft tissue, but confirmed). And on October 17th, one month after my last dose, my CA19-9 was right back up to 195. So I'm now Stage IV, just finished my first 3-week cycle of Gemcitabene/Abraxane. Good signs are that the tumors in my belly stopped hurting after the first infusion, and my CA19-9 dropped from 195 to 174 after my first infusion, and down to 121 after my second. Sure hope it keeps going!