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@tomrennie hi and thanks for your interest. I stopped Lanreotide after only one month. Symptoms were significant. Most concerning to my oncologist were the slow heart rate, daily at rest 42-46 and dipped to 39 during sleep. My oncologist hypothesizes that all symptoms may be related to the heart rate. Additionally, my heart rate was low (50 resting and 45 in sleep) even before the injection. This may in some way be linked to the pNET. The lanreotide seemed to amplify this. My PET scan showed that my tumor was highly hyperactive in somostatin, while lanreotide is a synthetic somostatin. Does this make sense to anyone?

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Replies to "@tomrennie hi and thanks for your interest. I stopped Lanreotide after only one month. Symptoms were..."

@micahnes I am unaware of a low heart rate being caused by a pNET. I am not saying that it isn't possible. Somatostatin receptors are usually overexpressed on the surface of well-differentiated neuroendocrine tumors. That's how lanreotide, and other NET treatments, frequently work. They seek out those receptors and attach to the NETs treating them. So, it makes sense that your tumor was active in somatostatin. Do you know what grade your pNET is? Has it spread anywhere? Are you seeing a NET specialist?