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High or Fluctuating Chromogranin A Level: What does it mean?

Neuroendocrine Tumors (NETs) | Last Active: Jun 18 3:39pm | Replies (184)
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@microbe1943

I am being evaluated for a host of symptoms...including flushing, spiking BP that is episodic, fast heart rate, GI distess in small bowel and lower bowel. I had stage VI metastatic pancreatic cancer 6 years ago. After treatment I have been totally in remission! Miracle. These newish symptoms came on maybe 6 months ago. My Chromogranin A is 5727! Yes, I take PPIs and yes I have chronic kidney disease (moderate); I have diabetes treated with insulin. I am going to get a PET/CT dototate (gallium I think) Feb 9 I just did the 24 hour 5 HIAA urine yesterday. Anyone have any thoughts on the outrageous hgh CGA? i also have Polymyalgia rheumatica new since july. I take 10 mg prednisone daily since then. Thanks for any input out there! Sharon

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Teresa, Volunteer Mentor | @hopeful33250 | Jan 23, 2022

Hello @microbe1943

I'm sure you feel concerned! Between the symptoms you've experienced and the high CGA level it is understandable. However, I would urge you to breathe deeply and give yourself a rest from thinking of the worst case scenario. I know this is easier said than done but as you know there are other factors that can contribute to a high CGA.

Since you have a PET/CT scan scheduled, I encourage you to wait for the results and give yourself a break from thinking about this. Do you have a good support group in place? If so, reach out and see if you can make plans to get together and have lunch or see a movie. Whatever you can do for some rest and relaxation is important during this waiting period.

Do you have someone you can call?

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