Neuroendocrine Tumors (NETs) Support Group

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Comments (224)

Could I please ask how high your Chromogranin A levels actually where?

https://connect.mayoclinic.org/comment/805031/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2023

I was diagnosed with Carcinoid in 2007. The mass had grown around several loops of my...

https://connect.mayoclinic.org/comment/804478/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31, 2023

I had high Chromograni A before whipple surgery to remove a Nuroendocrine gastrinoma tumour in the...

https://connect.mayoclinic.org/comment/804136/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31, 2023

Anyone on here with a high Chromogranin A blood results. Finding it difficult to get answers....

https://connect.mayoclinic.org/comment/801937/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2023

I undergone whipple surgery of pancreatic tumor 9 month back.after 1 months of surgery the chromogranin...

https://connect.mayoclinic.org/comment/795947/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 12, 2023

Mark/Sharon, The Chromogranin A blood specimen were sent to: ARUP Laboratories 500 Chipeta Way Salt Lake...

https://connect.mayoclinic.org/comment/792336/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2023

A 10 cm tumor was incidentally discovered on CT Scan in the fall of 2016. Was...

https://connect.mayoclinic.org/comment/790795/

Discussion: Advanced metastatic paraganglioma diagnosis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 31, 2022

Hi @reallywells Although CgA is the most widely used tumor marker in patients with a suspected...

https://connect.mayoclinic.org/comment/783611/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 11, 2022

Hello @sanjaykumar1, I can certainly understand your concern about the CGA level rising. It is hard...

https://connect.mayoclinic.org/comment/776826/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2022

They suggested that nothing can be said at the moment but since all the Ct scan...

https://connect.mayoclinic.org/comment/760819/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 13, 2022

Mark, you may also be interested in asking fellow members about their experiences with getting CgA...

https://connect.mayoclinic.org/comment/745411/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 4, 2022

I'm glad to hear that you are feeling better @tracyfurtiscaudle. I hope that your blood work...

https://connect.mayoclinic.org/comment/643479/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2021

I am currently seeing a homeopathic doctor who has prescribed ABP1 Assist Histamine/Gut & Histamine Scavenger...

https://connect.mayoclinic.org/comment/625065/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 10, 2021

Thank you for your reply! I have my endocrinologist, oncologist and gastroenterologist (I seem to have...

https://connect.mayoclinic.org/comment/623014/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2021

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

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