Neuroendocrine Tumors (NETs) Support Group

@nannybb Speaking of scented candles, I was so sensitive to fragrances, chemicals, everything, it was a...

https://connect.mayoclinic.org/comment/1541463/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2 5:53pm

@jhhaas I'm just wondering, if you have multiple nets throughout your lungs, why your doctor did...

https://connect.mayoclinic.org/comment/1539501/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31 10:14am

@myboys02 So glad to hear you are going for a second opinion at Sloan Kettering. Smart...

https://connect.mayoclinic.org/comment/1554907/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: 3 days ago

@sophiarose I see you are on Octreotide. Is it a once a month injection? Did you...

https://connect.mayoclinic.org/comment/1539475/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31 9:50am

@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

@hopeful33250 I have my first follow-up PET scan scheduled in a couple of months. So far,...

https://connect.mayoclinic.org/comment/1540579/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1 4:26pm

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

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

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

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

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

All the very best wishes for the 27th I did PRRT and I am stable for...

https://connect.mayoclinic.org/comment/1537213/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 28 10:41am

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

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 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

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

@apain Hi and welcome to Mayo Connect. I am glad that the Octreotide injections are working....

https://connect.mayoclinic.org/comment/1540432/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1 12:22pm

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