Neuroendocrine Gastrinoma Cancer and I was on ppi pills

Posted by gulzar @gulzar, May 10, 2016

I have neuroendocrine Gastrinoma cancer and I was on ppi pills for 18 years and I spoke to 6 gastrinoma patients they were on ppi for long time. I would like to know any others have same problem with ppi and gastrinoma also called zollinger Ellison syndrom.

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

Colleen Young, Connect Director | @colleenyoung | May 10, 2016

Welcome to Connect @gulzar.
I'm tagging @hopeful33250 and @irvkay312 on this discussion. While they don't have Gastrinoma, they are familiar with neuroendocrine tumors.

I'm also tagging @elowlow who spoke about Zollinger-Ellison syndrome quite sometime ago. I'd be interested if @elowlow has anything to add about prolonged proton pump inhibitor (PPI) and Zollinger-Ellison syndrome.

Gulzer, what treatment are you currently on?

Teresa, Volunteer Mentor | @hopeful33250 | Jan 20, 2017

Hello @gulzar, I see that you posted a discussion about neuroendocrine Gastrinoma cancer as it relates to PPI use. I have had three neuroendocrine tumors (NET) over the past 14 years. Prior to the first surgery in 2003, I had taken PPIs for a number of years. After my second surgery in 2005, my surgical oncologist suggested that I stop the PPIs and I did. Many doctors refuted his theory (and said I should continue with the Nexium) but I decided to follow his advice. My next NET was not until 2016, so I think that I may have given myself a break from the disorder. I now just take Zantac which reduces the stomach acid and or reflux without being a PPI (like Prilosec or Nexium). Has anyone else, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727 @dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes, had any advice or experience regarding the use of PPIs and NETs?