Is everyone with pNETs on creon?

Posted by kristys72 @kristys72, Oct 20, 2023

Hello. I’m thinking this may have been discussed before. Sorry if I’m asking an old question
Is everyone with a pNET on Creon. Pancreatic enzymes always have looked good on labs Was told that’s normal but the body isn’t using them correctly. That’s why there is a need to take Creon Recently, before PRRT, blood sugars have increased to above 450. I have read Creon can contribute to that Now on Humalog and Lantus
Has anyone else experienced this? Could just be the pancreas Wonder with treatment if we could come off insulin and even Creon
Background Diagnosed with 3 mm pNET to body of pancreas that is also in the liver and some bone. Starting symptoms 3years ago was uncontrollable diarrhea and weight loss. Was put on Creon immediately. Two years Lanreotide and just started PRRT therapy.
Thank you everyone 😊💕

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

mmar2025 | @mmar2025 | Apr 11 7:49am

In reply to @janmar1960 "I was diagnosed Oct 23 after 7 yrs being investigated and diagnosed with IBS. I have..." + (show)

@janmar1960 More or less had the same initial symptoms for years. Stomach problems that were treated with acid reducers. After a very bad stomach issue and an MRI followed by an endoscopy, the first conclusion was pancreatic cancer. It was like your mind got hit by a semi. My son had actually determined it was neuroendocrine tumors, and thank goodness he was correct. After more finite diagnosis and the dotatate pet scan which allowed for definite action, I started on lanreotide injections. After four injections it was determined that the growth was more than what the lanreotide could handle. So I started PRRT treatment in February 2026. I had a second treatment last week. No real results yet. No bad repercussions. Just extremely tired and unfortunately constipated which are definitely possible side effects. Stable is a great thing to be and that sounds as if that is where you are at right now.

doonman | @doonman | Apr 12 3:59pm

Diagnosed with 2 PNETs small and slow growing in tail and main body. Currently on monthly lanreotide injections 6 months. I do take Creon with every meal and seem to oscillate between constipation and diarrhea. I can say it's not the easiest issue to manage but hopeful.