Neuroendocrine Tumors (NETs) Support Group

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Comments (209)

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

Wow, you've gone through a lot as well. I totally agree on the Famotidine. My chromogranin...

https://connect.mayoclinic.org/comment/1078626/

Discussion: Anyone diagnosed with NET, Grade II of the esophagus/stomach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 31, 2024

Hey! Can I ask you if you fin the cause of your high chromogranin levels? I...

https://connect.mayoclinic.org/comment/1075446/

Discussion: Pancreastatin level at 1500

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2024

After my whipple procedure Mar 2020 my Chromogranin A and Serotonin levels remained higher than normal,...

https://connect.mayoclinic.org/comment/967519/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 19, 2023

We took her to Apollo hospitals in Hyderabad. They did a chromogranin a test and that...

https://connect.mayoclinic.org/comment/941294/

Discussion: Mother might have neuroendocrine tumors, is being told she has IBS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2023

An MRI found a 1.7 tumor in the trail of my pancreas. My doctor immediately sent...

https://connect.mayoclinic.org/comment/923971/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 4, 2023

2590 chromagranin A, I know HIGH right. Dotatate scan positive area pancreas and octreo scan showed...

https://connect.mayoclinic.org/comment/896692/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

I was first diagnosed with NETs in 2004 so I’ve had LOTS of lab-work done over...

https://connect.mayoclinic.org/comment/889603/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 3, 2023

Hello, I was recently tested for chromogranin a because of ongoing flushing and stomach issues. My...

https://connect.mayoclinic.org/comment/860119/

Discussion: Chromogranin A test via Quest: symptoms of NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 15, 2023

Hi @charlene630, welcome. I see that you recently had a blood test to check the chromogranin...

https://connect.mayoclinic.org/comment/850020/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 26, 2023

Chromogranin A blood test I need some information on how serious high levels are. Mine are...

https://connect.mayoclinic.org/comment/849279/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2023

Hello @wdd18054 My carcinoids were found with an upper endoscopy (is that what you meant by...

https://connect.mayoclinic.org/comment/186237/

Discussion: Multiple abnormal hormone levels - Could it be autoimmune related?

Support Group: Autoimmune Diseases

Posted: Feb 25, 2018

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

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

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

When it spread how much chromogranin did you have?

https://connect.mayoclinic.org/comment/1221556/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2025

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