Neuroendocrine Tumors (NETs) Support Group

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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

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

My first MRI was Dec 2022 when I was diagnosed. PET Scan was January 2023 to...

https://connect.mayoclinic.org/comment/1165530/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2024

I did lanreotide injections for about 3 years until it appeared that it was not as...

https://connect.mayoclinic.org/comment/1324845/

Discussion: Lanreotide side effects: diarrhea constipation, what to do?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 11 9:42am

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, 2024

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

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

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

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 NETs: Looking to connect with anyone with 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 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

Absolutely open to sharing. I was diagnosed originally in 2020 after a 30 day bout with...

https://connect.mayoclinic.org/comment/1292381/

Discussion: PanNET and CgA results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29 4:18am

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

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

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 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

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

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

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5, 2023

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

Hello @bubbledalmia and welcome to the NETs discussion on Mayo Connect. I can understand why you...

https://connect.mayoclinic.org/comment/1179413/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2024

Digestion issues are different for everyone. I had about a yard of small intestine removed and...

https://connect.mayoclinic.org/comment/879118/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 15, 2023

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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