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Carcinoid cancer: Want to meet others

Neuroendocrine Tumors (NETs) | Last Active: Aug 7, 2023 | Replies (93)

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@tamb1104

Hello, I am new to this forum and would like to know the following if it applies to anyone. Diagnosed with carcinoid tumor in 2016, metastasized to the liver with lesions. I have been having injections Somatuline 120mg every 28 days. Although I feel great the lesions are slowly increasing. Doctors recommend Lutathera treatment. Has anyone had this treatment, if so what was the side effects & results?

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Replies to "Hello, I am new to this forum and would like to know the following if it..."

I have had a very simular case of carcinoid and have had injections for 122 times on 28 day cycles. Leasions were stable or showed very minor growth until early this year. I just completed Luthera treatment, 4 treatments 8 weeks apart. A scan before my 3rd treatment showed no increase in tumor size, some reduction in size and no new leasions. The most significant side affect was headache and fatigue, started 3-4 days after each treatment and lasted about 10 days and then I felt fine with normal activity. I will have a scan in December to see how things are going.