Neuroendocrine Tumors (NETs) Support Group

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Comment

We are hopeful that the treatment will help reduce the size of the tumors again. These...

https://connect.mayoclinic.org/comment/887598/

Discussion: Looking for information on CAPTEM treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 30, 2023

Comment

Yes … taking ones weight off of the leg/hip being injected definitely helps! Having had many...

https://connect.mayoclinic.org/comment/882672/

Discussion: Advice for making monthly injections more tolerable

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2023

Comment

I had major flushing and diarrhea I was put in Lanreotide which made those symptoms worst...

https://connect.mayoclinic.org/comment/753332/

Discussion: My first sudden facial flush since NETs surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2022

Comment

I was also diagnosed accidentally when I had a CT scan for a possible hernia. The...

https://connect.mayoclinic.org/comment/1459500/

Discussion: Did anyone else have a long struggle to getting a NETs diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 12, 2025

Comment

We sound very similar. Small bowel primary with mets to liver. Started octreotide after bowel resection....

https://connect.mayoclinic.org/comment/1218810/

Discussion: Clay colored bowels & diarrhea side effects with Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22, 2025

Comment

@tammyv615 Good plan. I had my tumor ablation at UCLA. They have a NETs multidisciplinary team...

https://connect.mayoclinic.org/comment/1071228/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

Comment

November of 2024 was my last PRRT treatment and my results are still amazing My tumors...

https://connect.mayoclinic.org/comment/1498524/

Discussion: Stable metastatic NET – should I be pushing harder for PRRT?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5 8:18am

Comment

Hi @rogo It seems like we’ve communicated in the past. I have DIPNECH and lung NETs...

https://connect.mayoclinic.org/comment/1070950/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

Comment

Hi @ocean3131 I also have DIPNECH and you can read my other posts for more details...

https://connect.mayoclinic.org/comment/987810/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2023

Comment

I don’t know what to say. Mine is an Insulinoma, Pancreas and spread to my Liver....

https://connect.mayoclinic.org/comment/866991/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 26, 2023

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