What are other survivors doing about pancreatic enzymes replacement?

@beachdog, you're wife is not the only person who cannot tolerate Creon. @treadmillann also mentioned having a terrible reaction to Creon. She switched to over-the-counter papaya enzymes, but unfortunately the stool issues didn't subside with that alternative either. I'm tagging @marvinjsturing @cindee60 @kjrita and @tracyweis so they can share their experiences too.

Beachdog, how is your wife's appetite and calorie intake?

She was taking Creon. Started taking around her 8th folfironox cycle (she had 9 total) then continued after the radiation and surgery. Gag reflex prevented her from taking the capsules after surgery so she was mixing with applesauce. The doc kept telling her to increase dose because of diarrhea until finally she just stopped taking it altogether because we figured that if no amount is the correct amount, it wasn't working for her. Looking for other options because she can't go to the hospital for iv or feeding tube at this point.

@beachdog, welcome to Mayo Clinic Connect. I see that you wanted to post a link to your post above. New members cannot post web links for a few days. We do this to protect the community from spammers, i.e., people who join only to post links to sell something, etc. Clearly the link you wished to share was not spam. I have inserted the complete link for you.

What enzyme replacement is your wife using?

Is this the product you were referring to? https://www.pureencapsulations.com/pancreatic-enzyme-formula.html
I believe that my wife is allergic to the pork based Creon since she gets worse diarrhea when she uses it than when she doesn't. Would love to know if you or anyone else is using it and if it is effective. (Wasn't allowed to post the site)

Hello @patti1952

I am so sorry to hear of your partner's diagnosis. That is so unfortunate.

Teresa

Hello @pattie1952

When was your partner diagnosed?

Here is a link to the article I was talking about: https://advancingthescience.mayo.edu/2018/07/02/a-revolution-in-pancreatic-cancer-treatment/

Thank you so much but my partner has stage 4 pancreatic cancer that has metastasized to his hip bone. No one had suggested surgery just the radiation to the hip and chemo which he had to stop it caused a heart attack and had left him weaker then the start. They don't understand anything about him or why he is still alive for that matter.

Hello @patti1952

The Whipple procedure was developed by a Dr. Whipple back in the 1930's. It is a surgery for early stage pancreatic cancer patients.. (Although doctors at Mayo are developing procedures that are allowing them to successfully do surgery on patients with more advanced stages now.) In a typical Whipple, the surgeon removes the cancerous tumor from the pancreas, the duodenum, the gall bladder and part of the stomach. The surgeon then attaches the stomach and the pancreas to the small intestine.

In my case, I had already had gall bladder surgery, so the surgeon removed my duodenum, 1/3 of my stomach and most of my pancreas. What was left of my pancreas was so bad that the surgeon did not attach it to the digestive system. The pancreas makes insulin and digestive enzymes. I am now a Type I diabetic and I have to get the digestive enzymes in capsules every time I eat.

If you have any other questions, let me know and I will try to answer them.

Marv

Hello @hopeful33250

I was using Roman numerals. I was diagnosed as stage 2b. I had my surgery just over 4 years ago. I am feeling great. I just get tired very quickly. Since they removed most of my pancreas during surgery, I am now a Type I diabetic and control my blood sugar with insulin.

Marvin

Hello @marvinjsturing

You mentioned you were diagnosed "LLB" what does that mean exactly? How long ago was your surgery? How are you feeling now? Is your blood sugar under better control?

Marvin, I wish you well and I hope to hear from you again.

Teresa