Anyone with a grade 1 Pancreatic NET have constant stomach pains?

@ceefer Stomach pains can happen unfortunately. For me, they have come from digestive issues like gas. I was prescribed omeprazole and still take one pill every morning. It has helped me. Are you taking anything to help you with the stomach pain?

Hi. Thanks for that info. Unfortunately I’m not and I have an appointment with a NET Doctor in June. Hopefully that Doctor can prescribe something, as of now the gastroenterologist I’m seeing has just ignored it and keeps saying I shouldn’t be having the pain but not addressing it nor prescribing anything for it.

I have constant stomach pain for over a year and a half. Omerprozale and other acid reducers have not helped. Rapid Release Extra strength Tylenol 1000 mg helps me get through the days. Like u, I have Pnet and am waiting for surgical consults in Palo Alto and Stanford. A GI friend (not my Dr) recommended this pain relief.

I have been taking Tylenol for the pain. It’s hit or miss for me. Sometimes work and sometimes just barely.

@ceefer Until you know what is causing the pain, it is hard to pinpoint something specific to try. Even when you do know, each person's body is different. What works for one person, might not work for another. I believe the brand name for Omeprazole is Prilosec. Like @kathyfujii shared, it didn't work for her. I am glad that she found something that worked for her.

The GI that did my Endoscopy Ultrasound (EUS) said my pain is caused by the tumor. He offered a procedure that would control the pain with another EUS with medicine, but I'm waiting for the surgical consults and can manage with Tylenol around the clock.

@kathyfujii I understand. Sometimes, you have to do what you can to get by until the Calvary of help arrives.

@ceefer, is your medical team sure it's just "stomach pain," and NOT chronic pancreatitis?

Asking, because i had a pnet which was found when i was 28, due to the only bout of Pancreatitis i ever had that "showed" on an Amylase & Lipase test.

But by the time we went in to remove the pnet (it never got beyond 1cm, it was ONLY caught because it would "swell up" a bit & block off my pancreatic duct), i had unknowingly had Pancreatitis so many times over the 9.5+ years we knew about it, that i basically digested everything inside my pancreas, behind the lump.

The pain was typically "Feeling gross, bloated, and sick to my stomach" and it often felt, "like someone had shoved a fist-sized rock in my abdomen, right up under my stomach."

But because it WASN'T the "feeling like you're dying" major pain of regular pancreatitis, and my lavs never went wild again?

Most of the times, we didn't even realize it was pancreatitis (i DID occasionally get one instance of a "clay colored stool" with them--after i would start a "bland food diet, when i felt lousy--and that was how we'd realize it was another bout of pancreatitis.

But because i also carry my stress "in my stomach," it was often impossible to tell, "Am i stressed, orrrrr is this Pancreatitis?"

And--as i said, we didn't realize what had happened until the surgery to renove the tumor, after they removed my tail, and switched from a Whipple to a distal, due to the lack of "reattachable" viable tissue left in the tail.

But i've discovered in the 12 years since my distal, that it's pretty common for folks with Chronic Pancreatitis to GET that, without the "screaming" pain of Acute Pancreatitis--just "General stomach pain" and discomfort!

I hope you can find someone that you can work with, to help you figure it out!