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

Neuroendocrine Tumors (NETs) | Last Active: Oct 4 6:02am | Replies (18)
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@osiejay26

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.

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Replies to "Hi Teresa, We did a PET scan within the first month of discovering the tumors. It..."
Teresa, Volunteer Mentor | @hopeful33250 | Feb 1, 2023

@osiejay26
That must be discouraging to have the symptoms return after being controlled. What is your doctor saying about this change?

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hollywood817 | @hollywood817 | Oct 2 10:13am

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.

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