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4 treatment options from my doctor, which one should I start with?
Neuroendocrine Tumors (NETs) | Last Active: Mar 28 5:45pm | Replies (100)Comment receiving replies
Since 2018 I have small bowel NET/carcinoid, met to the liver. Surgery removed the primary tumor in 2018 & we've been treating the liver tumors to slow progression b/c there are too many to remove by surgery. In my opinion and past experience:
Octreotide will be the most conservative approach & least side effects. Effective, minimal progression. Next therapy was Everolimus.
Everolimus: My side effects were minimal. Effective, minimal progression. Next on was PRRT.
Lutathera/PRRT. The most effective of all my treatments. Almost 2 years to the day of no progression at all. I consider it the best of all. 4 treatments every 8 weeks. A little rough while the IV is happening but no significant side effects afterwards.
I am still on monthly Octreotide and have been since 2018. It started out as treatment for growth. Now it's primarily for symptom control. Now they want me to take Cabometyx.
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Hello @elainedanielle, and welcome to Mayo Clinic Connect. I appreciate you sharing your journey with NETs. I'm so glad that you posted about the different treatments. It sounds as if the PRRT was very effective.
You mentioned that you are now taking Octreotide for symptom control. Is that working well for you? Is Cabometyx being considered as a maintenance drug? How are you currently feeling?