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I have recently been diagnosed with my third neuroendocrine tumor

Neuroendocrine Tumors (NETs) | Last Active: Feb 12, 2017 | Replies (38)
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@hopeful33250

At U of M, the specialist's office calls the patient for the appointment, so I'm waiting to hear back from his office. I'm looking forward to meeting with him as I have some questions. Two weeks ago I had a clear Octreoscan with no metastatic disease and no significant radiotracer uptake in the area where the lesion is, but CgA of 179. That seems somewhat inconsistent but the high CgA could be a result of taking a PPI med over the past month. I've switched back to Zantac. My previous surgeries were much more extensive with a resection of the duodenal bulb, so I'm pleased that this can be done with an endoscope.

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Replies to "At U of M, the specialist's office calls the patient for the appointment, so I'm waiting..."
Kay | @irvkay312 | Mar 31, 2016

Do you or a family member have any form of Tuberous Sclerosis. Adenoma<br />
Sabacum, Ash Leaf spots, Shaggreen patches, ctc?<br />
<br />
Kay Kramer<br />
<br />
Those are carriers that materialize over time.<br />

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Colleen Young, Connect Director | @colleenyoung | Mar 31, 2016

Please keep us posted @hopeful33250. I hope they call soon. Waiting is so trying. I guess that's why they use the term "patient".

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Teresa, Volunteer Mentor | @hopeful33250 | Mar 31, 2016

No, I've never heard of those terms before.  I'll have to look them up to find out what they are. 

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gulzar | @gulzar | Feb 11, 2017

Hi Teresa It has been long time last time I wrote about ppi I am now trying to quit gradually and I am now taking one pill every 3 days when I try to move to 4th I experience diarrhea but have no problem with acid would like to know how you quit the ppi. I found a few articles it say ppi to pylori Bactria are the cause of gastronome. I wish someone do a survey at support sides for those who has gastronome.

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Teresa, Volunteer Mentor | @hopeful33250 | Feb 12, 2017

Hi @gulzar: I did not have gastronome but the carcinoid cancer issue, so my situation may be different that yours, however, I simply switched to a non-PPI med. I take Zantac now. Also, Pepcid is a non-PPI med that can be used. Perhaps your doctor could help you make the switch to a med that you would be more comfortable with. Please check with him/her. Teresa

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