Does have gastrinoma, or zollinger-ellison syndrome?

I'm a 26 year old female with Celiac disease.  I have been having more gastro trouble lately though.  Had a capsule endoscopy done about 7 weeks ago which revealed a large ulcer where the second and third part of the duodenum connect.  The ulcer is H. Pylori negative.  I strated PPI(proton pump inhibitor) therapy ASAP to heal it.  The symptoms were resistant to therapy so had a normal endoscopy done last week to check if the celiac disease is uncontrolled.  The celiac is fine.  My GI thinks I may have a gastrinoma of the pancreas (Zollinger-Ellison Syndrome).  I went of the PPI therapy last week as I need to be off for 2 weeks for an accurate blood test (fasting gastrin level) which will give us a good indication if I have this tumor or not. 

Does anyone here have this type of pancreatic cancer?

What have your experiences been?  Did you have to do chemo?  Or just surgery?  Was it hard locating your tumor?

My 5 year old son just ended 3 years of chemo for leukemia in March, so we are quite sick of cancer.  This is a lot to wrap my head around.  Any info would be greatly appreciated.

Sarah

On 6/17/2009 sarah_dbd wrote:

I'm a 26 year old female with Celiac disease.  I have been having more gastro trouble lately though.  Had a capsule endoscopy done about 7 weeks ago which revealed a large ulcer where the second and third part of the duodenum connect.  The ulcer is H. Pylori negative.  I strated PPI(proton pump inhibitor) therapy ASAP to heal it.  The symptoms were resistant to therapy so had a normal endoscopy done last week to check if the celiac disease is uncontrolled.  The celiac is fine.  My GI thinks I may have a gastrinoma of the pancreas (Zollinger-Ellison Syndrome).  I went of the PPI therapy last week as I need to be off for 2 weeks for an accurate blood test (fasting gastrin level) which will give us a good indication if I have this tumor or not. 

Does anyone here have this type of pancreatic cancer?

What have your experiences been?  Did you have to do chemo?  Or just surgery?  Was it hard locating your tumor?

My 5 year old son just ended 3 years of chemo for leukemia in March, so we are quite sick of cancer.  This is a lot to wrap my head around.  Any info would be greatly appreciated.

 

Sarah

Hi Sarah,

I was diagnosed with Zollinger Ellison on April 21st /09 this year. I am going for surgery on June 30 which is 3 days from now.Sometimes this disease is hard  to diagnose but once it is they usually recommend surgery. I have been told I won't need chemo but each case is different. If you want more information i suggest you go to  www.mdjunction.com, there is a very good support group there. Some have had the surgery already and others like me are still waiting. All the best to you.

Charlene