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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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@avawein

Just wanted to comment on this thread as I kind of had a similar experience. In July I went in for my 6 month scan and everything was stable, however, my serum serotonin went way up. I few weeks later my doctor, who had been using the gallium scans, tried a new scan with copper. Cu64 dotatate I think it is. It picked up two positive hotspots in my liver. The spots were seen on CT scans but it was assumed they were cysts. The gallium did not pick them up. See if you can get a scan done with the copper and not gallium. The copper was just approved for use in 2020 so still fairly new.

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Replies to "Just wanted to comment on this thread as I kind of had a similar experience. In..."
Teresa, Volunteer Mentor | @hopeful33250 | Sep 17, 2021

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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Colleen Young, Connect Director | @colleenyoung | Sep 20, 2021

Hi Ava,
Thanks for adding your experience with Copper Cu 64 Dotatate (Detectnet). As you mentioned it was only recently approved by the FDA in Sept 2020.

Copper Cu 64 Dotatate has a high clinical sensitivity and specificity, which helps clinicians provide a more accurate treatment approach for NETs patients.

For anyone interested in learning more, here's information from Mayo Clinic and the FDA approval
- FDA Approves Copper Cu 64 Dotatate Injection for Somatostatin Receptor–Positive NETs https://www.onclive.com/view/fda-approves-copper-cu-64-dotatate-injection-for-somatostatin-receptor-positive-nets
- Copper Cu 64 Dotatate (Intravenous Route) https://www.mayoclinic.org/drugs-supplements/copper-cu-64-dotatate-intravenous-route/description/drg-20502439

May I ask what led your care team to order the Cu 64 test instead of gallium? Is it being used as the new standard where you receive care?

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