Is an endoscopic PH test affected by otreotide?

Posted by rose2522 @rose2522, Sep 10 4:39pm

Hi, my name is Rose. I hope you are all as well as can be. Sorry for long message/question- I’ve been treated for Zollinger Ellison with no primary for 6 years with Otreotide every 3 weeks and PPI’s.

Despite treatment, my symptoms have been getting much more difficult over past year. A one time Endoscopic PH test was done in June after a PPI wash out and 24 hour fast, but I wasn’t instructed to stop taking my long acting otreotide shot. The result was an abnormal 3. Not the required 2. My last long acting otreotide shot was 21 days prior.

From what I understand long acting otreotide stays in your system for like three months indicating this is not a true baseline. Gastrin and cga were normal as well, but that also could have been effected by otreotide. (they are never normal and fluctuate between 700-1,600 gastrin, cga seems to move in tandem and I do understand the pharmacology influences) Now my university of Chicago neuroendocrine oncologist and surgeon are upending my “working” diagnosis.

Since my last otreotide shot in May I have lost 15 pounds. Nausea off the charts, Diarrhea increased again, episodes of stomach pain very, very hard. Constantly regurgitating acid and bile.

My PET repeatedly shows gastric uptake, but no hot spots with an SUV of 9.7. I was on otreotide for the gallium pet scans as well, if that means anything to anyone.

They are even suggesting I stop taking my PPI’s in case long term use is causing something- I don’t need this to be ZES, I just don’t want to be sick.

I was undiagnosed for years, then that it was most likely ZES. Now it’s not I guess, because of this PH test.

How do you challenge a university of Chicago neuroendocrine oncologist though? I must be completely wrong.

I came into oncology with no meds, high gastrin, high cga, gastric and intestinal ulcers and years of being sick. Years of being told I’m crazy. Now I’m back to square one.

Any thoughts are welcome. I'm sure after everything everyone here had been through, you can imagine mental toll.

Thank you so much for listening 🙏

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

Colleen Young, Connect Director | @colleenyoung | Sep 22 6:20pm

@rose2522, I note that you asked a similar question here: https://connect.mayoclinic.org/discussion/effect-of-otreotide-therapy-on-gastrin-serum-levels/

Have you been able to get any clarification from your medical team? What are next steps for you?

kevinmonroemi | @kevinmonroemi | Sep 22 9:07pm

I feel for you I also suffer from many gastrinomas have pancreatic primary and many in the liver. I had Gastrin as high as 2,000. I am grade 2 I’ve had about 15 endoscopy’s I never stopped PPI and I get Lanreotide shots I never stopped these also! I take up to 4 sulcrafate a day for my ulcers. I also suffered bad diarrhea for a couple years I was told my digestive tract was a total mess a whole day of vomiting caused a perforated esophagus. So I am wondering how they are treating you have they found your primary did they do a dotatate pet scan? Do you know the grade and KI -67 I would be asking a lot of questions don’t be shy about questioning anyone! Do you have a multidisciplinary team? I age a great team at University of Michigan I was diagnosed in May 2021

rose2522 | @rose2522 | Sep 23 9:35am

In reply to @kevinmonroemi "I feel for you I also suffer from many gastrinomas have pancreatic primary and many in..." + (show)

@kevinmonroemi

rose2522 | @rose2522 | Sep 23 9:42am

Hi! Thank you for reaching out. I do not have a primary. My gallium PET shows gastric uptake but no hot spots. I’ve been treated for last 6 years with otreotide and PPI’s. I have also had countless endoscopies.

My last one was solely to take a gastric ph level which came back as abnormal 3 but I was still on otreotide which means I think it was not a proper baseline, but my whole biochemical diagnosis is now in question.

My gastrin has gone as high as 1,700 and last chromagranin a was 1,540.

Today I have to see a new diagnostic gastroenterologist at University of Chicago. In the first years I was told I was crazy so many times that it deeply traumatized me. Meeting a new doctor is very scary. I hear she is not super compassionate. I’m just trying to stay calm.