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

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

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

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

@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

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

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

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

I like the idea of no treatment plan. Do I really want to get a work-up...

https://connect.mayoclinic.org/comment/1484112/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16 4:15pm

I was diagnosed accidentally in November last year with stage 4 NET's after having a CT...

https://connect.mayoclinic.org/comment/1479087/

Discussion: What does the future look like for a stage 4 NET patient?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10 3:43pm

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

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

After you have the resection I assume you will start monthly injections(?), ask your Dr. I...

https://connect.mayoclinic.org/comment/1348467/

Discussion: What's next after SiNETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 14, 2025

I appreciate your response. Did you have any other symptoms besides flushing? Also, did you have...

https://connect.mayoclinic.org/comment/1294812/

Discussion: What should I do? Carcinoid symptoms but no answers.

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2025

Hello all, I have been on PPI's since the mid 80's when I had a perforated...

https://connect.mayoclinic.org/comment/1276226/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 7, 2025

Hello . how are you? thank you very much for responding. My wife has a date...

https://connect.mayoclinic.org/comment/1234079/

Discussion: Cromogranina A

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10, 2025

Gustavo1975, there are other things that can cause an elevated Chromogranin A (such as the patient...

https://connect.mayoclinic.org/comment/1234066/

Discussion: Cromogranina A

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10, 2025

Having a high count on Chromogranin is indicative of a Neuroendocrine tumor, regardless of whether or...

https://connect.mayoclinic.org/comment/1232800/

Discussion: Cromogranina A

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2025

Hello, good afternoon. My name is Gustavo. I am from Buenos Aires, Argentina. My wife had...

https://connect.mayoclinic.org/comment/1231924/

Discussion: Cromogranina A

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7, 2025

Just some info that might help you: Until you have NETs under a microscope, you're insurance...

https://connect.mayoclinic.org/comment/1227630/

Discussion: New Diagnosis: husband's labs are all indicating NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2, 2025

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