Neuroendocrine Tumors (NETs) Support Group

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Comments (224)

My chromogranin A level is continuously rising from 500 after operation to more than 9000 now...

https://connect.mayoclinic.org/comment/800062/

Discussion: What topics do you want for the Neuroendocrine Support Group?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22, 2023

I am new to Lanreotide injections - same as Somatuline Depot monthly injections I get for...

https://connect.mayoclinic.org/comment/792305/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2023

Sharon Update: Her Chromogranin level in the most recent test was 164 (a big spike from...

https://connect.mayoclinic.org/comment/776375/

Discussion: Recommendation for Seattle Cancer Care Alliance MDs Treating NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2022

@fightinghopefully, I can understand that this would have you concerned, especially if your doctor appeared shocked...

https://connect.mayoclinic.org/comment/756048/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2022

Dear all, I was diagnosed with NET in 2017. Low grade. Non functional and asymptomatic. Until...

https://connect.mayoclinic.org/comment/755918/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2022

POTS stands for postural orthostatic tachycardia syndrome. It is a disorder of the autonomic nervous system...

https://connect.mayoclinic.org/comment/635178/

Discussion: Pancreastatin level at 1500

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2021

I am currently taking a histamine blocker for my facial flushing & GI issues. The high...

https://connect.mayoclinic.org/comment/625071/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 10, 2021

My hair has been exiting my scalp. My husband thinks it’s because I’ve had three Gallium...

https://connect.mayoclinic.org/comment/624830/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 9, 2021

Hi, there. Be calm. My Chromogranin A levels were 504 on my last blood test. HIAA...

https://connect.mayoclinic.org/comment/614114/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 5, 2021

Help! I had a lobectomy for a spindle-cell sarcoma in 2016. Because I was having flushing...

https://connect.mayoclinic.org/comment/609880/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2021

@musicflowers4u I'm so glad that you posted again about your test results. You must be relieved...

https://connect.mayoclinic.org/comment/308782/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2020

I would ask for a blood serum serotonin test; brain serotonin & NETS serotonin are released...

https://connect.mayoclinic.org/comment/1462170/

Discussion: Is the excess hormones the cause of uncontrollable crying at times?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 16, 2025

Hi, Well, I haven't spoken to anyone yet about anything. My referral to the surgeon went...

https://connect.mayoclinic.org/comment/1348691/

Discussion: What's next after SiNETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2025

After googling it, it means the tracer or dye they gave you was lighting up something...

https://connect.mayoclinic.org/comment/1301485/

Discussion: Focal SUV levels ga68pet/ct… what does that mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 11, 2025

Hey Jessie, the 3 PET's were over the span of at least 5 years. When they...

https://connect.mayoclinic.org/comment/1277893/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 9, 2025

Am I the only one that Lanreotide makes feel horrid? I’m nauseated and constipated with a...

https://connect.mayoclinic.org/comment/1248824/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2, 2025

I'm sorry you're going through this When you refer to pet scan was this a gallium...

https://connect.mayoclinic.org/comment/1226791/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2025

@snd, I can imagine you are frightened. Whenever new symptoms appear, it's easy to jump to...

https://connect.mayoclinic.org/comment/1216734/

Discussion: PNET removed 2 years ago: Can it come back at another site?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2025

I am equally confused with all these scans reports. On 8 July 24, CT scan revealed...

https://connect.mayoclinic.org/comment/1185942/

Discussion: What causes differences in reading of CAT Scan and MRI imaging?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2024

Hello @tammyd and welcome to the NETs support group on Mayo Connect. After having surgery three...

https://connect.mayoclinic.org/comment/1128481/

Discussion: My Chromogranin numbers are high. What is a more accurate test?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22, 2024

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