Neuroendocrine Tumors (NETs) Support Group

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Comments (932)

I started Lanreotide February 2023, didn’t stop the hot flashes (carcinoid syndrome). Dr switched me to...

https://connect.mayoclinic.org/comment/1289422/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2025

They call the disease Zebras because no 2 are the same I never had a hot...

https://connect.mayoclinic.org/comment/1196548/

Discussion: What does my dentist need to know about my NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 24, 2024

My 4th Lanreotide injection was Monday. By Tuesday AM I had a painful pimple in crease...

https://connect.mayoclinic.org/comment/1125460/

Discussion: Facial and lip sores from lanreotide injections for NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 17, 2024

Wow, there are many comments here that actually don't pertain to my post. But I will...

https://connect.mayoclinic.org/comment/1500025/

Discussion: I saw the surgeon. More confused than ever.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7 8:38am

@kdubbs I have both DIPNECH and lung NETs. Your best bet finding someone to treat DIPNECH...

https://connect.mayoclinic.org/comment/1532862/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22 12:39pm

Hello I have been taken Lanreotide every 4wks since February 2021 soon to be 2 yrs....

https://connect.mayoclinic.org/comment/791999/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2023

Good morning, I was diagnoses with Stage 4 NET's in December 2022 primary in small intestines...

https://connect.mayoclinic.org/comment/1476398/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7 7:59am

I am about the same one year out from diagnosis with absolutely no treatment from the...

https://connect.mayoclinic.org/comment/1208243/

Discussion: I am one year out with my diagnosis just finished 4th round of PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2025

I did not tolerate well the milk shakes, probably due to milk, but also cacao is...

https://connect.mayoclinic.org/comment/919089/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 26, 2023

Hi. Sorry it took me so long to reply. I traveled on Saturday to a NET...

https://connect.mayoclinic.org/comment/163157/

Discussion: How to get a second opinion for an international patient??

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 15, 2017

I was diagnosed Oct 23 after 7 yrs being investigated and diagnosed with IBS. I have...

https://connect.mayoclinic.org/comment/1057667/

Discussion: Is everyone with pNETs on creon?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 26, 2024

Sorry you haven’t had luck with the lanreotide injections. My husband was diagnosed as a high...

https://connect.mayoclinic.org/comment/1050488/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 14, 2024

Well I’m going to Mayo on the 11th for my 6 month gallium scan. I’ve been...

https://connect.mayoclinic.org/comment/940462/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2023

Most people have replied about CgA. I live in Uk and have grade 1, small bowel...

https://connect.mayoclinic.org/comment/1091150/

Discussion: What is a normal range for Chromogranin A test? Mine was 99 in 2021.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2024

Here is a link from the Carcinoid Cancer Foundation about 10 Highlights of the Year 2014...

https://connect.mayoclinic.org/comment/127203/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2016

I have experienced this and feel something in my armpit lymph node area too. My oncologist...

https://connect.mayoclinic.org/comment/1073038/

Discussion: Lung Nets and pain in arm pit

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 23, 2024

Hi It's a shame that a blockage had to be the warning sign. I was never...

https://connect.mayoclinic.org/comment/920251/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 28, 2023

@emma044 I’m sorry to hear about your Dad’s diagnosis, but he can and will beat this....

https://connect.mayoclinic.org/comment/835080/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2023

Hello @sophiarose Personally, I have never taken either octreotide or lanreotide so I do not know...

https://connect.mayoclinic.org/comment/727713/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2022

Welcome to the group. I have had success controlling my blood sugar with Octreotide (Sandostatin LAR...

https://connect.mayoclinic.org/comment/1180040/

Discussion: Neuroendocrine insulinoma and MDS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 26, 2024

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