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gulzar
@gulzar

Posts: 39
Joined: May 10, 2016

Neuroendocrine Gastrinoma Cancer and I was on ppi pills

Posted by @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.

REPLY

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?

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?

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