1. < Neuroendocrine Tumors (NETs)

NETs: Anyone has Liver debulking for liver metastasis?

Posted by mkmn @mkmn, Jul 13, 2022

I am interested in hearing from anyone who may have recently had liver debulking surgery due to mets to the liver? thanks. MKMN

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

dbamos1945 | @dbamos1945 | Dec 18, 2022
In reply to @cu2 "Hello Everyone I also have NETs that has metastasized on the inside of my Liver. I..." + (show)
@cu2

Hello Everyone I also have NETs that has metastasized on the inside of my Liver. I have been on the Lanreotide injection for about 18 months now, and so far I have been doing well with it. I just wanted to know What is liver debunking I’m so sorry I just never heard of that term. I’m a two time heart attack survivor and I have stage 4 liver cancer that started in my small intestine and metastasized on the inside of my liver and I have CKD stage one which there’s nothing much I can do about that because it’s hereditary. I don’t think I’m a candidate for surgery on my liver though. I just wanted to share that with you all.

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Thank you for your post. I have small bowel primary NETs with liver met only diagnosed in October 2022. I just had 2nd shot of Somatuline. Your post has reassured me that I have hope to live with this disease for awhile! Please accept my hug of appreciation for sharing. I live in Hemet CA if you have found net specialist in this area… I am curious about liver debunking too!

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links | @links | Dec 19, 2022

I am interested in hearing from anyone who has an insulinoma neuroendocrine tumor.
I have been under chemotherapy since July...was also on afinitor(everlimous) but had to stop that for now because or side effects. This week will be my 12th infusion. Was not a candidate for surgery at the onset..hoping down the road. along with radiation for the liver lesions. They want to keep going with the chemo as long as it is working. The sugars have been a job in itself trying to manage!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 23, 2022
In reply to @links "I am interested in hearing from anyone who has an insulinoma neuroendocrine tumor. I have been..." + (show)
@links

I am interested in hearing from anyone who has an insulinoma neuroendocrine tumor.
I have been under chemotherapy since July...was also on afinitor(everlimous) but had to stop that for now because or side effects. This week will be my 12th infusion. Was not a candidate for surgery at the onset..hoping down the road. along with radiation for the liver lesions. They want to keep going with the chemo as long as it is working. The sugars have been a job in itself trying to manage!

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Welcome, @links. You may wish to connect with others living with insulinoma neuroendocrine tumor in this active discussion:
- NET - Insulinoma https://connect.mayoclinic.org/discussion/net-insulinoma/

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gsm13161 | @gsm13161 | Dec 27, 2022

I had robotic assisted liver debunking 9/6/22. Doctor said would help with the hormones being produced by the tumors.

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carcinoid23462 | @carcinoid23462 | Dec 29, 2022

I had liver scans & surgery as a first step since I had been undiagnosed to the point I weighed a little over 105 lbs (and I have big bone legs).

It was performed by an interventional radiologist. 3 positive tumors were found and removed. This action ordered by a Dr. Arthur Vinik, an international know endocrinologist, saved my life.

Unfortunately the primary has never been found and could be extremely small. They've tried to find it again a couple of time without success.

When first diagnosed, Dr. Vinik put me on a pump 24/7 of Sandostatin and 2 injections every two weeks. I stayed on both for 3 1/2 years. At that point I only had the 2 injections every 2 weeks until about 2019 or 2020.

Since then I have gone down to 1 injection every 2 weeks. I still flush sometimes (it likes to let me know it's still there I guess).

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 29, 2022
In reply to @carcinoid23462 "I had liver scans & surgery as a first step since I had been undiagnosed to..." + (show)
@carcinoid23462

I had liver scans & surgery as a first step since I had been undiagnosed to the point I weighed a little over 105 lbs (and I have big bone legs).

It was performed by an interventional radiologist. 3 positive tumors were found and removed. This action ordered by a Dr. Arthur Vinik, an international know endocrinologist, saved my life.

Unfortunately the primary has never been found and could be extremely small. They've tried to find it again a couple of time without success.

When first diagnosed, Dr. Vinik put me on a pump 24/7 of Sandostatin and 2 injections every two weeks. I stayed on both for 3 1/2 years. At that point I only had the 2 injections every 2 weeks until about 2019 or 2020.

Since then I have gone down to 1 injection every 2 weeks. I still flush sometimes (it likes to let me know it's still there I guess).

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Hello @carcinoid23462,

It was good to read about your history with liver surgery and treatments. It sounds like you have had some good treatment and help with your symptoms. Sharing about your journey with NETs is a real help to everyone in this discussion group.

You said that the primary NET was never found, and they've tried to find it without success. Do you recall the tests and/or scans that were used to try and find the primary?

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