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SDHB Positive and Ga-68 Dotatate Scan question.

Neuroendocrine Tumors (NETs) | Last Active: Jul 11, 2023 | Replies (10)
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@gsm13161

Hi. I'm sdha positive with advanced metastatic paraganglioma that started in the abdominal area. I'm told the GA 68 scan is the best for finding tumors that show somatostatin uptake. Since your tumor is in the head/neck area I believe the research shows those will not likely metastasize to other areas of the body. Are there plans to remove the tumor? Are you having any of the classic symptoms of a functioning paraganglioma such as high blood pressure, headaches or sweating?

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Replies to "Hi. I'm sdha positive with advanced metastatic paraganglioma that started in the abdominal area. I'm told..."
coachv | @coachv | Jul 9, 2023

Highest blood pressure I have had to date is had is 247 over 185, you can feel your hair grow literally. Heart rate can go up to 190 and drop back in the double digits. GA68 did not find anything below the shoulders. Extremely episodic though. No pattern. I have had ultra low blood pressure since childhood, 105 over you can barely hear, two different types of migraines, developed a third one in the last 20 months.
Yes plans to remove the tumor. I do want to find out what makes that thing tick or what else besides the tumor can spin things up like that.
Dumb question on your SDHA, is yours hereditary? What kind of a mutation? When you found out, did you test for other mutations, non NEC? I have been told there are 80 some of them. SDHB mutation can trigger kidney and GIST cancers. They just removed three cysts from my kidneys past Friday. Sorry for the million questions and thanks very much in advance. V

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