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Comments (696)

Thanks for all the comments regarding my son. His medical care is 24-7 sometimes sitting is...

https://connect.mayoclinic.org/comment/1303165/

He got the Octreotide injection.

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 13, 2025

Hi @cmc188 I have 50+ lung NETs tumors across both lungs. I also have DIPNECH (really...

https://connect.mayoclinic.org/comment/1199984/

I’ve been taking monthly octreotide

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2024

Nana120, welcome to the Mayo Connect online support group for Neuroendocrine tumor patients. I hope you’ll...

https://connect.mayoclinic.org/comment/898735/

I’ve been on Octreotide injections since

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

Hello, My name is Lenora and this is my first time commenting on the NETs website....

https://connect.mayoclinic.org/comment/668493/

receiving first line treatment with Octreotide

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2022

@helloitsme, Something you said in your initial post just struck a chord with me, and that...

https://connect.mayoclinic.org/comment/854505/

me every three months and order my Octreotide

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2023

Hi @josey1 Sorry about all that you are going through. I have both DIPNECH and typical...

https://connect.mayoclinic.org/comment/906758/

I've been taking octreotide injections ... those receptors seem to respond to octreotide

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2023

Hi Eileen; I’m sure you’re in complete shock with your diagnosis. Your case sounds a lot...

https://connect.mayoclinic.org/comment/1284362/

recovery) & immediately started Octreotide

Discussion: New To NETS - Stage 4 / Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2025

My husband was diagnosed with GTSBnet grade1-grade2 well-differented tumor 3 years ago. First you have to...

https://connect.mayoclinic.org/comment/1204614/

You have to get Octreotide in IV before

Discussion: Can anyone share information about NET in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2025

ricki8, I haven't been part of this conversation, but decided to join tonight. I went to...

https://connect.mayoclinic.org/comment/1009722/

Oct. 2021, continue with my 30 MG Octreotide

Discussion: Update: Lutethera treatment is over

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2024

I just had my what has become a yearly as opposed to every three to six...

https://connect.mayoclinic.org/comment/854136/

I take a monthly injection of Octreotide

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2023

Hi @ce1b I take Octreotide (similar to lanreotide) injections every 4 weeks for my lung NETs....

https://connect.mayoclinic.org/comment/896824/

Hi @ce1b I take Octreotide (similar

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

Following a very uncomfortable blockage (I had had no carcinoid syndrome), on July 1, 2022 I...

https://connect.mayoclinic.org/comment/874619/

My oncologist offered to begin Octreotide

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 8, 2023

Sorry to hear about your NETS diagnosis. Check out LACNETS.org and you will find so much...

https://connect.mayoclinic.org/comment/842248/

I've been on octreotide injections

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2023

Shari, that's so great to hear that you are doing so well!!! Did you have genetic...

https://connect.mayoclinic.org/comment/244183/

literature for paraganglioma treated with octreotide

Discussion: Paraganglioma / Carotid Body Tumor Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2019

Here’s a brief summary prior to starting treatment with Dr Wolin. 59 year old male presents...

https://connect.mayoclinic.org/comment/1238487/

Current plan of treatment- monthly Octreotide

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2025

Thanks for your update. It made me realize I haven't even looked at this thread since...

https://connect.mayoclinic.org/comment/1272515/

am on 3X daily shots of fast acting Octreotide

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2, 2025

Hi tatteesmom3, are you seeing a NETS (neuroendocrine tumor) multidisiciplinary team or just a local oncologist...

https://connect.mayoclinic.org/comment/844936/

Now after taking octreotide injections

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2023

I, too, have high grade (2/3) metastatic NETs—liver, pancreas, lungs, bone, adrenal gland, parotid gland. I...

https://connect.mayoclinic.org/comment/811356/

which I started in December 2022, with octreotide

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2023

@gprior Thank you for the response. You’ve been through a lot. I’m sorry to hear of...

https://connect.mayoclinic.org/comment/1224889/

I’ve taken monthly octreotide injections

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2025

@sop, I’m sorry to hear that your husband has been diagnosed with these rare tumors, but...

https://connect.mayoclinic.org/comment/943323/

They immediately started me on Octreotide ... I continue to be on Octrotide LAR 30

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2023