Northwoods NETS - MN Neuroendocrine Cancer Support

Dawn Marie | 18 year #PNET #RN #MSN #PHN #neuroendocrinecancer #Basel #BadBerka #pancancer #thriver #livertransplant #NETCancer #PRRT #lu177 #y90 #ac225

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

Today I'm "celebrating" my 15 year diagnosis with #pancreatic #neuroendocrine #cancer. I've undergone treatment on average every 18 months. I'm not alive because of "wait and see" doctoring or by luck. My advice: be your own advocate. Find a medical team that works w/ you. #pnet

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

https://t.co/W0tUHbQiNG

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

I had to update my bio. I realized I'd missed the anniversary of my 18th year of living with pancreatic neuroendocrine tumors. Treatments have been vast, but I'm doing ok. Given my 3 - 5 year timestamp when I was first diagnosed, I'd say I've outlived the odds. #pnet #netcancer

[Thor Halfdanarson @OncoThor]

No need to "lug the jug" anymore...
One of my favorite sayings of the late Dr. Eugene Woltering, one of the most passionate NET colleague I ever met.
This excellent study by @HansHofland1 shows an excellent correlation between serum 5-HIAA and 24-urine 5-HIAA in patients with carcinoid syndrome. We made this change at Mayo Clinic several years ago and having a reliable 5-HIAA blood test with fast turnaround time makes a big difference.

https://t.co/5TGVkqHjIu

[Thor Halfdanarson @OncoThor]

Incidental tumors found in > 1800 appendectomy specimens foll (those with pre-op suspicion of a mass excluded). Incidental neoplasm was detected in 1.3% and more often in those who were older. Not surprisingly, a third of the detected neoplasms were NETs. Not the first study of this kind but very nicely done...

https://t.co/obQSdl3jfr

[Thor Halfdanarson @OncoThor]

More on bone metastases in patients with NENs... 320 patients from 18 Italian centers, mostly well/mod diff NETs. Interestingly, bone was the first site of mets in 41%. mOS was 62 months and SREs observed in 22% and 31% of patients received antiresorptive therapy.

Primary lung site, Ki-67 ≥55% versus ≤20%, >10 BMs, mixed pattern (osteoblastic/osteolytic) vs osteoblastic, prior lung mets and SREs were found to be significant poor prognosis factors.

https://t.co/og0BD5A1jQ

@FRANCES88189587 @cives_mauro @saramassironi

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

In person support is this Sunday, November 16 at 1 pm. Click for more details. - https://t.co/Gqp3R4QfGO

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

Medicare open enrollment resources, living a life of purpose, and Zoom Support on 10/19 - https://t.co/zNVyUL31DD

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

Neuroendocrine tumor patient support at Lunds and Byerlys in Plymouth on Sunday, September 21 from 1 pm - 3 pm - https://t.co/UgaWY3Gki8

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

@honeyglowoman Honestly, I'm not sure if insurance would cover the test or not. I'm not sure if having that diagnosis really changes the course of treatment. Are you seeing a specialist? They would be able to answer that question for you. 🌠

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

In memory of Pete Fuglestad - https://t.co/sWR5zoaa7i

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

REMINDER: July Picnic and two valuable upcoming webinars - https://t.co/FwL4GS3UnW

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

July Picnic and two valuable upcoming webinars - https://t.co/t5hGLhsq7f

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

June Zoom Cancelled. In-person conference in Minneapolis this Saturday! - https://t.co/2TtL0fkbOk

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

June Zoom Update and Two Other Events This Month! This amazing photo is titled "Zebras and Flamingos in Ngoro Ngoro," in Tanzania, 2008 © carlo matta - https://t.co/jULrvkh4PJ

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

*|FNAME|*, Join Us on Sunday For Our In-person Support Group & information about upcoming events - https://t.co/6b57k2ACYs

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

Springtime is a season for reflection, renewal, and self care. - https://t.co/XjAg53Zj1V

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

QUICK REMINDER: Our in-person support meeting is tomorrow at a new location! It will be at the Minnetonka Community Center, Shady Oak Room, at 1 p.m. 14600 Minnetonka Blvd., Minnetonka MN 55345- https://t.co/uC21x31qNB

[Northwoods NETS - MN Neuroendocrine Cancer Support @NorthwoodsNETS]

Happy Spring! Updates for our new meeting space this month! - https://t.co/IuoVhMReCM