Neuroendocrine Tumors (NETs) Support Group

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Comments (568)

That is wonderful news I get my second Followup scans on July 3 What are you...

https://connect.mayoclinic.org/comment/1338931/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 1 6:50am

Yes. Octreotide is known to increase blood sugar. Many have to go on metformin to control...

https://connect.mayoclinic.org/comment/1261727/

Discussion: Liver function (birirubin, globulin, glucose, iron) and Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19 8:58am

I didn’t have success with my Dotatate scan either. I recently started the octreotide shots and...

https://connect.mayoclinic.org/comment/1358995/

Discussion: Recently diagnosed with a NET in my middle lobe of my right lung.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 29 7:13am

I have had 5 octreotide injections so far and have been loosing weight ( which I...

https://connect.mayoclinic.org/comment/919026/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 26, 2023

Thanks for your post! I thought I might be the only one with reactions to octreotide!...

https://connect.mayoclinic.org/comment/994669/

Discussion: Rash/Hives with Octreotide injection

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2024

Hello @carolc66 and welcome to the NETs discussion group on Mayo Connect. While I've had three...

https://connect.mayoclinic.org/comment/748669/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 12, 2022

My husband was switched from Octreotide to Lanreoride 4 mos. ago & he said he has...

https://connect.mayoclinic.org/comment/1060449/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2024

My husband is on 28 day octreotide shots in addition to the cap/tem. No hypoglycemic episodes...

https://connect.mayoclinic.org/comment/943958/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2023

Hi...I had the gallium PET. It was negative. But a CT enterography found it... I'm not...

https://connect.mayoclinic.org/comment/1386858/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 4 5:59pm

I have been on Lanreotide for 11 months now, and Octreotide for the previous 13 years....

https://connect.mayoclinic.org/comment/826838/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 16, 2023

I did the Lanreotide injections for 3 months Then switched To Octreotide which I am currently...

https://connect.mayoclinic.org/comment/819293/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2023

@tennisfan I hope that the Octreotide injections are helpful to you in managing the carcinoid symptoms...

https://connect.mayoclinic.org/comment/806381/

Discussion: Newly diagnosed - neuroendocrine tumor in intestines

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2023

Hi Teresa, Thanks for following up. I have surgery scheduled for October 21st to have the...

https://connect.mayoclinic.org/comment/636553/

Discussion: Possible NET with No Evidence of Tumor: Mediastinal Mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2021

Hello 👋🏻 My treatment was with Octreotide (Sandostatina LAR30) One each 4 weeks, 18 doses. Between...

https://connect.mayoclinic.org/comment/794591/

Discussion: PET Ga-68 Scan Scheduling vs. Most Recent Lanreotide Injection

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2023

BTW, I’m in the Cam2029 Clinical Trial at Mayo/Jacksonville and tolerating biweekly octreotide injections very well...

https://connect.mayoclinic.org/comment/1065502/

Discussion: Grade 1 Non-functioning (NF) NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2024

Yes, I would say your throat clearing is from DIPNECH. Octreotide fixed that for me. Yes,...

https://connect.mayoclinic.org/comment/1330274/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19 12:56am

Thanks @hopeful33250 ! The PET was negative, I did a 5-day trial of short acting Octreotide...

https://connect.mayoclinic.org/comment/271268/

Discussion: Possible NET with No Evidence of Tumor: Mediastinal Mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 21, 2019

My octreotide injections are scheduled every 28 days, and my next 3 are on the calendar.....

https://connect.mayoclinic.org/comment/901161/

Discussion: How long do I wait between injections and PET scans.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 24, 2023

There are different kinds of pet scans. There is one that is specific for nets called...

https://connect.mayoclinic.org/comment/1388706/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 7 11:49am

My surgeon suspects that I have a carcinoid tumor in my intestine and is going to...

https://connect.mayoclinic.org/comment/802671/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28, 2023

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