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Neuroendocrine Tumors (NETs) | Last Active: Apr 17 5:51pm | Replies (384)Comment receiving replies
Hi Neuroendocrine Group, I am Neuroendocrine Breast Cancer (rare) with mets in liver and bones. It took 2 years for me to find a doctor to acknowledge this. Prior, I had been treated like every other breast cancer patient and it wasn't working. Now I have had one Bland Liver Embolization to the right lobe, and have my second one coming up soon. This should take care of the liver tumors. BUT, the bone mets are worse, even on the Octreotide, Afinitor and Anastrozole. Sooo, I have been given the option of Lutethium infusions, which is really radioactive intravenous treatments that target the cancer. Its given over a course of 6 months, once every 2 months for 4 treatments. I'm a little nervous about it. Anyone else have liver and bone mets that this was successful in treating? Or for any other NED's? What's been your experience? I've heard about some good results.
Replies to "Hi Neuroendocrine Group, I am Neuroendocrine Breast Cancer (rare) with mets in liver and bones. It..."
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I have NETS mets to the liver with unknown primary and underwent PRRT treatment at Mayo Arizona last year (July 21-Jan 22). I completed all 4 treatments with a very good result result--significant shrinkage in all tumors. Follow-up since shows stability. The treatment itself is not difficult--a long day but the staff makes you very comfortable. My side effects were mostly fatigue (worse at the beginning of treatments) and not feeling great the first few days after treatment. By the end, my blood counts were down (to be expected) and I felt pretty tired--but in general the side effects are not difficult. I've been reminded by my doctor that every patient reacts differently, but based on my experience, I would do it again. Hope that helps!