Living with Neuroendocrine NETS, any advice?

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

Yes,the last one was Thursday January 2

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.

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

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

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

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

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!

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..

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