Straight to the liver: Anyone have NETs originating in strange areas?

I was diagnosed in 2019 with NETS of the liver my tumors were extremely large and had to be removed
The biopsies came back stage 2 and grade 2.5 not metastatic like you very rare
I was told we got it all!!!
2 1/2 years later I was diagnosed with metastatic liver cancer with an unknown origin
Probably somewhere in my gut
Well if it is there 2 years later it still hasn’t should it ugly face
My bloods and all the NET levels where over the top before my resection after all my bloods were normal and to date 5 years later remain normal
I never had any carcinoid symptoms until I started Lanreotide then I got the flushing and diarrhea
My head spins over this!!!!
I have done every treatment they have thrown at me
I am currently doing PRRT I get my last treatment October 9th so far it doesn’t appear to be working
What’s next?? Is always my question
I wish you the best
Keep up the fight

Glad to learn you pursued PRRT Lutathera treatment series. Others have thought it wasn’t working, only to be surprised to learn couple months after completion that tumors had shrunk or disappeared on scan. Then they report that they had several years of feeling great with disease stability. I hope this is your case too!
I am also having PRRT and receiving 3rd infusion 10/1. I visualize it working and am planning on many good days ahead. Hope is free and I am sending you a bushel basket full!

Glad to learn you pursued PRRT Lutathera treatment series. Others have thought it wasn’t working, only to be surprised to learn couple months after completion that tumors had shrunk or disappeared on scan. Then they report that they had several years of feeling great with disease stability. I hope this is your case too!
I am also having PRRT and receiving 3rd infusion 10/1. I visualize it working and am planning on many good days ahead. Hope is free and I am sending you a bushel basket full!

Good luck to you!

I have Stage IV carcinoid originally in my ileum, and now in my liver.

Is your insurance paying for PRRT?

Please keep us posted on your progress. Best wishes.

I began PRRT in June 2024 and today received the 3rd infusion without any issues. I am being treated at City of Hope in Duarte, CA, and the first two Lutathera infusions were 80% paid by Medicare and most remaining charges paid by my United Healthcare Senior Supplement Insurance. One item is questionable and was not paid (about $4000) by either; however there has been NO COH or UHC claim or billing. My diagnosis was Neuroendocrine Tumor primary Small Intestine/Stomach with Metastases to Liver; Stage 4; Grade 1. I am grateful for my Medicare and UnitedHealthcare policies and the payment procedures in place. I have been researching the 2025 changes and it sounds like it will be appreciated by all cancer patients. Time will tell.

Hi Teresa, We did a PET scan within the first month of discovering the tumors. It revealed that they were contained to my liver and nowhere else. I have CT and MRI scans every three months to monitor my tumors and see if there any additional tumors. So far none have been found. I'm receiving an injection of Lanreotide every four weeks. When I first started the treatment my flushing decreased and my CgA levels decreased as well. Now my flushing has returned with a vengeance so has my CgA levels regardless of treatment.

My NET started in the pancreas (though I don't have pancreatic cancer) and migrated to the liver. Monthly lanreotide has almost eliminated the small cancer spot I had in pancreas and kidney. NET is stable and I was preparing for some additional chemo this fall (had 4 treatments spring of 2023). However, I've recently been accepted into a trial called-
Protocol #: VMT-a-NET-T101 / VMT-a-NET. Dr Sibley is the study doctor. A similar trial in Germany to treat prostate cancer can be found here: https://www.nejm.org/doi/full/10.1056/NEJMoa1607427. This trial consists of "alpha amino radiation". It is 4 treatments, 8 weeks apart. The first treatment is next Tuesday Oct 8th. I'm not 100% certain how I was selected for this trial though I've been told it;s due to having the right type of cancer, oncologist recommendation, timing (they had a slot available), and my positive attitude. This new Alpha cancer treatment is similar to beta amino but has resulted in the killing of more of the cancer, and more importantly, the cancer killed doesn't recur, and the treatment can be used multiple times. Side effects are minimal. Read more here: https://www.nature.com/articles/s41419-024-06435-w
I'll report back soon with an update, wishing you all the best with your journey.