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Lanreotide eventually becomes less effective, why?
Neuroendocrine Tumors (NETs) | Last Active: 6 hours ago | Replies (11)Comment receiving replies
@dadcue Sorry for misunderstanding, but I think of symptoms as things like vomiting and diarrhea. So you are feeling ok? Functional means that the NETs are producing hormones which usually cause symptoms. Nonfunctional means that the NETs are not producing hormones which means no symptoms. Has anything been biopsied? You are right. Some things may contribute, but we may never know. I do know that you have a lot going on. You can only eat this elephant one bite at a time. Don't be too hard on yourself.
Replies to "@dadcue Sorry for misunderstanding, but I think of symptoms as things like vomiting and diarrhea. So..."
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No recent vomiting but some diarrhea that is sometimes hard to control. I had more abdominal pain in the past but they found kidney stones which are still present but aren't moving. Kidney stones only hurt when they move. I sometimes dehydrate myself when I don't drink enough water because I worry about diarrhea and/or profuse sweating.
My kidney stones are composed of uric acid. Now I have learned that
NETs might be linked to kidney stones. NETs can cause the body to change how it absorbs food. This can cause uric acid kidney stones.
I'm asked about flushing, night sweats and many other symptom. I deny those things because they used to be a lot worse. Too much Prednisone causes all kinds of symptoms. I had a low cortisol level when Prednisone was stopped which wasn't so good either. A carcinoid crisis sounds very similar to an adrenal crisis to me.
Even though I deny many of the symptoms, the NET specialist said that I have carcinoid syndrome. The NET specialist says Lanrotide will help but I might not notice the difference. He said my hormone levels won't always match how I feel. I think he meant I shouldn't feel as good as I do but I feel relatively good but that could change.
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No biopsy has been done because the surgeon would have done that had I agreed to surgery. I had annual CT scans from 2020 to monitor my kidney stones. The primary NET can be seen retroactively since 2020 but it wasn't mentioned on any CT scan report until 2025. My PCP first mentioned the "possible NET" to me in Jan 2026. My PCP said it should be "investigated" but there was some confusion about how to investigate it.
The investigation is done now and I have seen a NET specialist and every other doctor that is part of the team. The NET specialist seems to know what it is and how fast it is growing. The primary site has metastasized but not too far based on a Dotatate scan. The plan is to see what Lanreotide does and reevaluate in 6 months since I don't want to do surgery first.