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Possible NET with No Evidence of Tumor: Mediastinal Mass

Neuroendocrine Tumors (NETs) | Last Active: Nov 2, 2021 | Replies (34)
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@hopeful33250

Hello @avawein

You posted about finding some"hotspots" on your liver after having a CU64 dotatate. I was wondering how you were doing. Do you have any biopsies or treatments planned for the future?

I look forward to hearing from you again. Will you post an update?

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Replies to "Hello @avawein You posted about finding some"hotspots" on your liver after having a CU64 dotatate. I..."
avawein | @avawein | Sep 18, 2021

Hi Teresa,

Thanks for following up. I have surgery scheduled for October 21st to have the liver tumors removed. My doctor put me on octreotide acetate (200 mcg) 3x/day to see if it would relieve my carcinoid syndrome symptoms. I felt great after the first injection - I believe it did help with my symptoms, but about 1.5 hours post injection I started having some pretty strong pain in my upper abdomen all the way around to my spine. I had my gall bladder removed 5 years ago but the pain felt just like previous gall bladder attacks. Unfortunately, I had to stop the octreotide and will discuss it with my doctor on Monday. Would be curious to know if others had a reaction like that to the octreotide.

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