Neuroendocrine Tumors (NETs) Support Group

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Hello @dbmenger I see that you are still dealing with high fluctuating high Chromogranin-A levels and...

https://connect.mayoclinic.org/comment/622828/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2021

Comment

Did you also have the HIAA5 urine test? I had a 540 Chromogranin test result. Two...

https://connect.mayoclinic.org/comment/617200/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2021

Comment

That is good news, @kaforester3, yes, PPI meds like the ones you mentioned can cause high...

https://connect.mayoclinic.org/comment/308786/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 19, 2020

Comment

Dana Farber in Boston has the Gallium 68 Dotatate PET scan. My Chromagranin tests have all...

https://connect.mayoclinic.org/comment/308781/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2020

Comment

@klpetts I so appreciate the update and I'm so pleased for you!!! It is so good...

https://connect.mayoclinic.org/comment/257032/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2020

Comment

As promised here is my update from Thursday (Jul 23). Lab work, CT on office visit...

https://connect.mayoclinic.org/comment/257031/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2020

Comment

Hello @kaforester3, I can understand your concerns, especially when your doctor does not give you much...

https://connect.mayoclinic.org/comment/308776/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2020

Comment

I’d had GI issues for years, never mentioned it to doctors. I was diagnosed Lactose intolerance...

https://connect.mayoclinic.org/comment/303673/

Discussion: NETs, Toilet Paper, a rant and a little humor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2020

Comment

Hi Samotuline Depot is actually Lanreotide, so it is probably not a substitution. Regarding serotonin in...

https://connect.mayoclinic.org/comment/1462076/

Discussion: Should NET w/liver met patient stop rx that has Seratonin?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 16, 2025

Comment

Hello everybody, I hope you are all doing well. I'm quite worried for my mom (she...

https://connect.mayoclinic.org/comment/1460768/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 14, 2025

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