Neuroendocrine Tumors (NETs) Support Group

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Comments (615)

@phyllisden Glad to know the combination of PRRT with Octreotide have produced stable result for you....

https://connect.mayoclinic.org/comment/1060680/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2024

@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: 3 days ago

They are the monthly octreotide injections

https://connect.mayoclinic.org/comment/748531/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 12, 2022

Treatment with prrt or octreotide

https://connect.mayoclinic.org/comment/90130/

Discussion: I have recently been diagnosed with my third neuroendocrine tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2016

I’ve been taking octreotide injections for over 3 years for lung NETs. Cause fatigue especially the...

https://connect.mayoclinic.org/comment/1098642/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 3, 2024

Hair thinning, fatigue, low blood pressure and heart rate, blood sugar spikes. I also started breast...

https://connect.mayoclinic.org/comment/1172022/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2024

Great news What is the difference between octreotide and lanreotide I currently switched doctors and she...

https://connect.mayoclinic.org/comment/727432/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2022

I found this info on the internet. Might be useful to understand these drugs. Octreotide is...

https://connect.mayoclinic.org/comment/1250720/

Discussion: New and concerned about my wife.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5, 2025

Have started the octreotide and so far so good.

https://connect.mayoclinic.org/comment/851962/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 30, 2023

I appreciate your sharing your diagnosis and treatment. I have one doctor recommending octreotide and one...

https://connect.mayoclinic.org/comment/1161763/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2024

You mention Octreotide and ability to avoid so far. This has been recommended for me but...

https://connect.mayoclinic.org/comment/817247/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2023

@gprior Have you tried octreotide injections for respiratory symptoms? It has been life changing for me....

https://connect.mayoclinic.org/comment/1142710/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2024

Interested that octreotide was not prescribed for you. Seems like it is the norm. Would be...

https://connect.mayoclinic.org/comment/1171807/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2024

Don’t know if you know However If you get Octreotide on Monday you have to wait...

https://connect.mayoclinic.org/comment/1387707/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 5, 2025

I just pulled this from Mayo's website: "Octreotide injection is used to treat severe diarrhea and...

https://connect.mayoclinic.org/comment/1345945/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2025

Yes he has been on the OCTREOTIDE monthly injections for 12 months now

https://connect.mayoclinic.org/comment/887919/

Discussion: Looking for information on CAPTEM treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 30, 2023

I have been taking Octreotide LAR 30mg for 8 years. I also have muscle fatigue and...

https://connect.mayoclinic.org/comment/1506871/

Discussion: What helps with muscle aches and weakness after Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15 10:50pm

Hi I did 4 PRRT treatments with octreotide Did a PET scan and a MRI It...

https://connect.mayoclinic.org/comment/1303390/

Discussion: Update: Lutethera treatment is over

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 13, 2025

Octreotide lowered my blood pressure and heart rate. Also causes fatigue.

https://connect.mayoclinic.org/comment/1026432/

Discussion: Anyone have problems with elevated blood pressure while on Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3, 2024

I have been on Octreotide for about 7 months, I haven’t missed an injection during that...

https://connect.mayoclinic.org/comment/967687/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 19, 2023

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