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Anyone have side effects after Lanreotide injection?
Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (108)Comment receiving replies
@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?
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@tomrennie Thanks again! It is Grade 1. My Oncologist is not a pNet specialist but my surgeon is. I am trying figure this out if my symptoms are caused by the tumor to determine if I should get surgery in hopes of stopping these symptoms. Clearly the lanreotide exacerbated these symptoms (that are not typically linked to pNet). But it was like kicking a beehive. So my thought process is that my tumor is doing something that the lanreotide amplified. I saw the link to somatostatin and drew that conclusion. The outward manifestation of these symptoms are tingling and extreme chills. No blood tests or neurological tests show a root cause. The symptoms appeared about a year prior to finding the pNet and have remained. All doctors and specialists are baffled (Cardio, Neuro, Sleep, Primary Care). The general opinion is that based on the time concurrent with the tumor it is likely related - - have the surgery and hopefully that resolves it. So I am looking for anything that can confirm the link to the tumor. Anyone else find the heart rate (last night 38 bpm) concerning? Or anyone see a link of the symptoms to the tumor?