Neuroendocrine Tumors (NETs) Support Group

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Comments (641)

Sophiarose Hope your thanksgiving was good. I’ve been on Ocreotide for 18 months, it does control...

https://connect.mayoclinic.org/comment/1181640/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2024

Reaching to to anyone taking Ocreotide In October I finished my 4th and last PRRT treatment...

https://connect.mayoclinic.org/comment/1181602/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2024

We got an appointment for second opinion. Two days before we consulted with doctor that was...

https://connect.mayoclinic.org/comment/1160931/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2024

After being on Ocreotide for almost 2 years a few of my tumors were still growing,...

https://connect.mayoclinic.org/comment/1346238/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 12, 2025

I do not have a stent, the PRRT treatment I received was called Lutathera, all 4...

https://connect.mayoclinic.org/comment/1313017/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 26, 2025

All forms of nets are still pretty rare but more cases are being diagnosed all the...

https://connect.mayoclinic.org/comment/1296399/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2025

The treatments are induced by IV, it takes about 5 hours total. Starts with an amino...

https://connect.mayoclinic.org/comment/1283718/

Discussion: NET in jejunum spread to liver: Treatment options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 17, 2025

PRRT ( peptide receptor radionuclide therapy) is a radiation treatment.. I was on Ocreotide injections for...

https://connect.mayoclinic.org/comment/1258508/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2025

If the injection is Lanreotide every 28! I did 3 injections and had to switch to...

https://connect.mayoclinic.org/comment/1197109/

Discussion: Stage 4 Carcinoid tumor: What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 25, 2024

Thank you very much! Well it was partial resection around 50 cm with ileocecal valve. I...

https://connect.mayoclinic.org/comment/1194019/

Discussion: Still have symptoms after surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 20, 2024

I have had Scans read wrong I think private places don’t really know what they are...

https://connect.mayoclinic.org/comment/1184710/

Discussion: What causes differences in reading of CAT Scan and MRI imaging?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 5, 2024

I have seen octriotide lessons symptoms and can reduce tumor growth. Mom wll be getting another...

https://connect.mayoclinic.org/comment/1162009/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2024

Thank you for your quick response I took 3 infusions of Lanreotide in 2022 had to...

https://connect.mayoclinic.org/comment/1128751/

Discussion: Short acting Ocreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22, 2024

Funny story went to the hospital years ago and they never found anything other than an...

https://connect.mayoclinic.org/comment/1047775/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 9, 2024

The tumors are grade 2 Stage 4 I had bland embolization No radiation I am now...

https://connect.mayoclinic.org/comment/978230/

Discussion: After liver embolization: Looking for the best diet + food suggestions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 10, 2023

I was diagnosed with DIPNECH at National Jewish Health (NJH) 3/23. I've been coughing and being...

https://connect.mayoclinic.org/comment/906680/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 2, 2023

My hubs was diagnosed in 2019 with an intestinal blockage. Surgery revealed he had the NET...

https://connect.mayoclinic.org/comment/899657/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 21, 2023

Ok. My hubs is on octrotide (sandostatin) injections. Maybe that's why it's not an issue.

https://connect.mayoclinic.org/comment/879432/

Discussion: Octreoscan/Ga-68 DOTATATE PET/CT -- Where to go?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2023

I went on to Ocreotide The first 3 injections I had side effects that weren’t so...

https://connect.mayoclinic.org/comment/868253/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2023

I am so sorry for you and your husband I am on 10mg of Ocreotide and...

https://connect.mayoclinic.org/comment/832950/

Discussion: Stage 4 Carcinoid tumor: What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 27, 2023

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