Neuroendocrine Tumors (NETs) Support Group

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I was diagnosed with carcinoid cancer in 2003. I am still receiving 1 sandostation injection every...

https://connect.mayoclinic.org/comment/773744/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 16, 2022

Hi @hopeful33250. Our story is a lot of drama so far. Around Christmas my husband had...

https://connect.mayoclinic.org/comment/872940/

Discussion: Carcinoid liver cancer/carcinoid heart disease/ kidney damage

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 5, 2023

I'm glad that my description of the "day in the life of Lutethera " will help...

https://connect.mayoclinic.org/comment/995251/

Discussion: Update: Lutethera treatment is over

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10 9:01pm

@briea Welcome to the Mayo Clinic Connect. You will find lots of support and people who...

https://connect.mayoclinic.org/comment/914666/

Discussion: Anyone with an insulinoma have only therapies instead of surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 17, 2023

Hi I’ve been living with carcinoid tumor now since 2011 when I first learned I had...

https://connect.mayoclinic.org/comment/747582/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 9, 2022

Wow! To all in this discussion. My husband is due to have his first liver debulking...

https://connect.mayoclinic.org/comment/771459/

Discussion: NETs: Anyone has Liver debulking for liver metastasis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2022

I started on Eberolimus 10mg daily March 2023. I developed mouth sores which bece more manageable...

https://connect.mayoclinic.org/comment/1117855/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 4 4:49pm

I’m so sorry you’re having all these problems! My NET was found in my cecum during...

https://connect.mayoclinic.org/comment/898113/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2023

Kim1965, I was very interesting to read about your wife’s case. Sounds very similar to mine...

https://connect.mayoclinic.org/comment/932191/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2023

Hi, you have been through a lot, hoping you can find the answers you need. The...

https://connect.mayoclinic.org/comment/918714/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 25, 2023

Hello, I had surgery in June to remove a tumor and then found out it spread...

https://connect.mayoclinic.org/comment/940026/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2023

Bob, To provide some additional information. . . I have had 2 surgeries - a modified...

https://connect.mayoclinic.org/comment/806975/

Discussion: Pancreatic neuroendocrine insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2023

Hello, here is an update. Sept 21 heart surgery to replace two valves in my heart....

https://connect.mayoclinic.org/comment/182057/

Discussion: Mayo Presentation at the Northwoods NETs group - 1/14/18

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2018

My sister was diagnosed with PNET. They went in to do the surgery to remove half...

https://connect.mayoclinic.org/comment/780856/

Discussion: Pancreatic NF-NET stable since 2005 - surgery or not?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 4, 2022

Hi Marlene [and all], I also live in Massachusetts and am going to Dana Farber. As...

https://connect.mayoclinic.org/comment/806596/

Discussion: Pancreatic neuroendocrine insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5, 2023

I have had three cycles, so far, of Lutathera, starting in December 2022. and have my...

https://connect.mayoclinic.org/comment/859738/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 14, 2023

I was diagnosed with Carcinoid Cancer w/an unknown primary in 2003. For 3 years I was...

https://connect.mayoclinic.org/comment/746044/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 6, 2022

Hello I have had about 16 rounds of chemo..happening every two weeks. The primary tumor is...

https://connect.mayoclinic.org/comment/807274/

Discussion: Pancreatic neuroendocrine insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2023

@keeper3102 Hi Lucy! I’m sorry I just saw your message now. Yes I’ll add you to...

https://connect.mayoclinic.org/comment/765123/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2022

I haven’t had any problems with pain. My biggest problem is with Neuropathy in my hands...

https://connect.mayoclinic.org/comment/834575/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 30, 2023

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