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What should I do? Carcinoid symptoms but no answers.

Neuroendocrine Tumors (NETs) | Last Active: May 11 10:05am | Replies (16)
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@vinnie694

I would definitely see a NET specialist, I have carcinoid syndrome , NET’s started in my small intestine and spread to my liver. I had a biopsy diagnose what the tumors were. I was getting the hot flashes 25-30 times a day, I get Ocreotide injections monthly and that seems to keep the hot flashes under control.. my flashes were only facial..

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Replies to "I would definitely see a NET specialist, I have carcinoid syndrome , NET’s started in my..."
parker27 | @parker27 | May 2 8:40am

I appreciate your response. Did you have any other symptoms besides flushing? Also, did you have any tests ( 5HIAA, chromogranin, etc) or scans that indicated the presence of a NET? The problem I am running into is I am only having the flushing, but no blood/urine tests or scans are indicating anything, so my doctor is not recommending me anywhere.

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coachv | @coachv | May 6 3:23pm

Vinnie, thank you so much for sharing. If not too personal of a question, have you had genetics test done after your diagnosis? I tested positive for double hit SDHB mutation after metastatic paraganglioma diagnosis. In addition to PG and PH, I was told GIST and kidneys are likely candidates.
Thank you in advance.

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