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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 4 days ago
In reply to @cindypat1 "My large tumor is in the liver. Anyone know of how that size located there is..." + (show)
@cindypat1

My large tumor is in the liver. Anyone know of how that size located there is handled? I know everyone is different. Thanks!

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Hello @cindypat1 and welcome to the NETs support group on Mayo Connect. We have many members on Connect with NETs in the liver. There are many treatments such as chemotherapy, embolization, injections, etc. I searched Connect discussions that speak of NETs in the liver. Here is a link to those discussions:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=liver#discussion-listview
I would encourage you to read these posts to understand the many treatment plans.

It sounds like this is a relatively new diagnosis for you. Is this correct? What is your oncologist suggesting as a treatment?

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1 reply
pavlina60 | @pavlina60 | 4 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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How did the drs find the growths? MRI or CT?
I was diagnosed 2 yrs ago ( December 2022)via F18- DG PET scan; had Ga Dotatate before surgery ( debulking) and have been having CT scans with contrast every 4 mo.
Hugs, and keep the fight!
Pavlina

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1 reply
greenmountainzebra | @greenmountainzebra | 4 days ago
In reply to @hopeful33250 "Hello @greenmountainzebra, Yes, as mentioned by @vinnie694, the NETs virtual support group meets on the first..." + (show)
@hopeful33250

Hello @greenmountainzebra,

Yes, as mentioned by @vinnie694, the NETs virtual support group meets on the first Thursday of each month via Zoom, from 5:30 to 7 p.m. EST. If you would like to be put on the email list for a meeting notification, please send a message to the social worker who facilitates the meeting: Loriell Grossling at Email: Grossling.loriell@mayo.edu

I hope you can attend the February meeting!

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Yes! Thank you. I will be there. I’ll email now to get in the list.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 4 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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Hello @greenmountainzebra,

Yes, as mentioned by @vinnie694, the NETs virtual support group meets on the first Thursday of each month via Zoom, from 5:30 to 7 p.m. EST. If you would like to be put on the email list for a meeting notification, please send a message to the social worker who facilitates the meeting: Loriell Grossling at Email: Grossling.loriell@mayo.edu

I hope you can attend the February meeting!

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1 reply
vinnie694 | @vinnie694 | 4 days ago
In reply to @kevinmonroemi "I meant to say ki-67 % I am a 7 low grade 2" + (show)
@kevinmonroemi

I meant to say ki-67 % I am a 7 low grade 2

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My ki-67 is 6.6%

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kevinmonroemi | @kevinmonroemi | 5 days ago
In reply to @vinnie694 "Kevin ,I’m a Grade 2, not sure what the ki is but krenning is a 4.." + (show)
@vinnie694

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

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I meant to say ki-67 % I am a 7 low grade 2

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1 reply
cindypat1 | @cindypat1 | 5 days ago
In reply to @tmneuro "Hi Cindy, As encouragement…I had a lime size tumor removed from my mid gut (terminal ileum)..." + (show)
@tmneuro

Hi Cindy, As encouragement…I had a lime size tumor removed from my mid gut (terminal ileum) 11 years ago and I am still here - getting my monthly lanreotide shot every 28 days. I am stage 4, tumors in liver and mesentery but thankfully they continue to be stable. So hold onto hope that you can be there for your husband. Tim

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My large tumor is in the liver. Anyone know of how that size located there is handled? I know everyone is different. Thanks!

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1 reply
tmneuro | @tmneuro | 5 days ago
In reply to @cindypat1 "Hi, My name is Cindy. I was just diagnosed with Grade 2 Stage 4 NET in..." + (show)
@cindypat1

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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Hi Cindy, As encouragement…I had a lime size tumor removed from my mid gut (terminal ileum) 11 years ago and I am still here - getting my monthly lanreotide shot every 28 days. I am stage 4, tumors in liver and mesentery but thankfully they continue to be stable. So hold onto hope that you can be there for your husband. Tim

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1 reply
tmneuro | @tmneuro | 5 days ago
In reply to @vinnie694 "Yes,the last one was Thursday January 2" + (show)
@vinnie694

Yes,the last one was Thursday January 2

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And I forgot about it and missed it! So sad about that...

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Turkey | @tomrennie | 5 days ago
In reply to @vinnie694 "tomrennie, , the growth has been very slow but steady for a little less than a..." + (show)
@vinnie694

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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Bummer to hear. Good luck with everything. I have learned a lot from you. Thank you.

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