Neuroendocrine Tumors (NETs) Support Group

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Comments (224)

Looks like my first tests were done on my biopsies and then had follow up blood...

https://connect.mayoclinic.org/comment/1042936/

Discussion: Anyone have experience with "functioning" Pancreatic NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 30, 2024

Hello @maymaria and welcome to Mayo Connect. I can certainly understand your concern about your daughter....

https://connect.mayoclinic.org/comment/982471/

Discussion: Appendiceal Neuroendocrine Tumor: any experiences to share?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 18, 2023

Joy5877: Colleen please correct me if I am sharing incorrect or misleading info: Neuroendocrine carcinoid tumors...

https://connect.mayoclinic.org/comment/972554/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2023

How high is too high for Chromogranin A? Mine was 2590 and urine 5-HIAA, somatostatin level...

https://connect.mayoclinic.org/comment/893988/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2023

Chromogranin is a fairly reliable biomarker used to monitor patients with neuroendocrine cancers. Mine was up...

https://connect.mayoclinic.org/comment/882094/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 20, 2023

My Chromogranin A was 1507 last year and the PET was negative. In February I was...

https://connect.mayoclinic.org/comment/880883/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2023

My wife has (and has had for more than a year) Chromogranin A levels of 2000...

https://connect.mayoclinic.org/comment/825676/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 13, 2023

I am 69 years old and am diagnosed with multiple liver metastasis from lung carcinoid tumor....

https://connect.mayoclinic.org/comment/825019/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

I, experienced weight gain, depression, and muscle soreness. I was also lethargic, often lacking the energy...

https://connect.mayoclinic.org/comment/805097/

Discussion: Gynecologic neuroendocrine metastasized to lungs: Need a specialist

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2023

The protocol used by most oncologists is based on the National Comprehensive Cancer Network's recommendations, and...

https://connect.mayoclinic.org/comment/802916/

Discussion: What's your NETs treatment and surveillance protocol?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28, 2023

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

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