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Posts (56)

Tue, Apr 2 10:54am · Do you have NETs and live in Wisconsin? in Neuroendocrine Tumors (NETs)

Wisconsin has its own patient directed group for those with NETs and their caregivers. Its called Wisconsin Neuroendocrine Cancer Connection. The group is on facebook. This year are planning three gatherings – one in Appleton, another near Milwaukee and one in Madison. The benefits are being able to share experiences, get questions answered, deal with insurance issues, gain emotional support and meet new friends. Also this year, we've joined NCAN – Neuroendocrine Cancer Awareness Network – the largest patient focused NETs group in the world. This will provide us access to more resources. Please share the attached flyer with your local oncologist and other medical professionals who may treat those with NETs.

Tue, Mar 19 9:08pm · Anyone treated for NETs at Mayo Clinic in Jacksonville, FL in Neuroendocrine Tumors (NETs)

Neuroendocrine tumor – the cancer that Steve Jobs and Aretha Franklin died from.

Oct 3, 2018 · NET - Insulinoma in Neuroendocrine Tumors (NETs)

Here is a link you should find useful. Most either will take you the building you need to go to or there are busses. https://www.tripadvisor.com/SmartDeals-g43466-Rochester_Minnesota-Hotel-Deals.html

Oct 3, 2018 · NET - Insulinoma in Neuroendocrine Tumors (NETs)

Uggg. I hope you can find answers. I can feel your frustration.

Sep 25, 2018 · NET - Insulinoma in Neuroendocrine Tumors (NETs)

I’ll speak to 3 & 4. My wife with NETs (ileum), 50 METS to liver has been seen @ Mayo 3 1/2 years. She’s has 2 surgeries, regular labs, scans and office visits. We are a 4 hour drive.

All will agree results are better when seen at a high volume speciality center like Mayo. This is based on evidence.

If there are no recognized NET specialists ‘in- network’, then you should file a ‘grievance’ with your insurer. I’m happy to help you with the language and letter. I’ve been through this several times.

Sep 14, 2018 · NET - Insulinoma in Neuroendocrine Tumors (NETs)

My wife had two major NET surgeries at Methodist. Everything went as expected and she was well taken care of by the highly trained, caring and compassionate staff. Prayers to you for your successful surgery.

Aug 1, 2018 · PRRT has been approved by the FDA Jan 26, 2018, as expected in Neuroendocrine Tumors (NETs)

The first MR after 3-months on Afinitor 10 mg daily showed stability to slightly improved liver tumors (50+). No major side effects. CG-A and 5HIAA all improved (not to within normal ranges however).