1. < Neuroendocrine Tumors (NETs)

Living with Neuroendocrine NETS, any advice?

Posted by gg66 @gg66, Dec 13, 2024

Hi I am new here and just want to have a good place to chat with people that share my thoughts and concerns about my experience

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

vinnie694 | @vinnie694 | 5 days ago
In reply to @greenmountainzebra "I’m trying to figure out when the NET support group meets? Is it the first Thursday..." + (show)
@greenmountainzebra

I’m trying to figure out when the NET support group meets? Is it the first Thursday of every month? Thank you.

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Yes,the last one was Thursday January 2

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1 reply
vinnie694 | @vinnie694 | 5 days ago
In reply to @tomrennie "Hey Vinnie, when did you find out that they are growing again?" + (show)
@tomrennie

Hey Vinnie, when did you find out that they are growing again?

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tomrennie, , the growth has been very slow but steady for a little less than a year, on about 3-4 tumors..

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1 reply
vinnie694 | @vinnie694 | 5 days ago
In reply to @kevinmonroemi "Vinnie, what grade and ki are you?" + (show)
@kevinmonroemi

Vinnie, what grade and ki are you?

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Kevin ,I’m a Grade 2, not sure what the ki is but krenning is a 4..

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1 reply
greenmountainzebra | @greenmountainzebra | 5 days ago

I’m trying to figure out when the NET support group meets? Is it the first Thursday of every month? Thank you.

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2 replies
kevinmonroemi | @kevinmonroemi | 6 days ago
In reply to @tomrennie "Hey Vinnie, when did you find out that they are growing again?" + (show)
@tomrennie

Hey Vinnie, when did you find out that they are growing again?

Jump to this post

Vinnie, what grade and ki are you?

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1 reply
Turkey | @tomrennie | 6 days ago
In reply to @vinnie694 "I was diagnosed 2 years ago, with stage 4 ,started in my lower intestines and metastasized..." + (show)
@vinnie694

I was diagnosed 2 years ago, with stage 4 ,started in my lower intestines and metastasized to my liver, 16 tumors on my liver I believe the largest was around 2.8, I’ve been on Ocreotide injections every 28 days . So far it has stopped the spread, but a few have started to increase. Had my first Lutathera treatment last month to assist in stopping the growth.. So far in 2 years I still feel the same, no major issues with the treatments, only a little nausea and diarrhea for 2 days after.. I am currently going to Mayo for my treatments , everyone is different with their treatments, I wasn’t a candidate for surgery.. As far as life expectancy, don’t loose hope, there are people on this site that have been getting shots / treatments for many years.. I go to Mayo Jacksonville, and I totally trust my team..

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Hey Vinnie, when did you find out that they are growing again?

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2 replies
vinnie694 | @vinnie694 | 6 days ago

I was diagnosed 2 years ago, with stage 4 ,started in my lower intestines and metastasized to my liver, 16 tumors on my liver I believe the largest was around 2.8, I’ve been on Ocreotide injections every 28 days . So far it has stopped the spread, but a few have started to increase. Had my first Lutathera treatment last month to assist in stopping the growth.. So far in 2 years I still feel the same, no major issues with the treatments, only a little nausea and diarrhea for 2 days after.. I am currently going to Mayo for my treatments , everyone is different with their treatments, I wasn’t a candidate for surgery.. As far as life expectancy, don’t loose hope, there are people on this site that have been getting shots / treatments for many years.. I go to Mayo Jacksonville, and I totally trust my team..

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2 replies
cindypat1 | @cindypat1 | Jan 1 9:52pm

Hi,

My name is Cindy. I was just diagnosed with Grade 2 Stage 4 NET in my liver. From my biopsy they’re thinking it might have started in the midgut. I go to Mayo in February for more testing and to find out about any treatments. My liver mass is large, over 6 cm. The waiting is so hard. I am feeling good right now but, of course, you never know how long that will last. My husband has ALS and I need to be here to take care of him as he progresses. Everything I read online doesn’t give a good life expectancy. Helps to hear what other people are experiencing.

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1 reply
Nancy VanHauen | @vanhauen | Dec 29, 2024
In reply to @amygirl "Has any one else also been told they have fatty liver and would loosing weight in..." + (show)
@amygirl

Has any one else also been told they have fatty liver and would loosing weight in general hoping from the liver also make any difference with NET? Seems the belly is the last to notice getting smaller.

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Yes, my fatty liver disease has gotten severe in the past year (as shown by my MRI’s) while my liver cancer has been stable. I am seeing a liver specialist at Mayo in Rochester next week.

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amygirl | @amygirl | Dec 28, 2024
In reply to @hopeful33250 "I understand, @amygirl, however, Connect members are not medical professionals, but patients like yourself. The question..." + (show)
@hopeful33250

I understand, @amygirl, however, Connect members are not medical professionals, but patients like yourself. The question you are asking about the correlation between NETs in the liver and fatty liver disease is something that your doctor could answer better.

In very general terms, I do not recall seeing any posts from NET members with liver NETs who also have fatty liver disease, however, feel free to search the Connect website to see what you can find. You can search by going to the top of any page on Connect where you see the "Search" bar. There you can type in the information you are looking for. If you find anyone discussing this correlation, you can post to them and make comments or ask questions.

Does that help?

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Ok Thank you

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