Atypical Net Ki-67-10 (lung primary, metastases to bones and spine)

Posted by Amy S @amyschwietz, 6 days ago

Hello— I was diagnosed 12/25 Atypical lung primary Ki-67/ 10% metastasis to the liver, spine, skull and bone.
Dotatate negative with limited to no somasatin uptake. I am not a candidate for Lanreotide or the like. I did have TAE to my liver. The next in line is Everolimus-
My question is for the people in my similar situation; What meds you are doing / have you done for the cancer and for the pain. What has your experience been?
What have people discovered about clinical trials? What other tests should I have done?
Thank you for the information. I’m doing this ride solo and it gets the better of my energy sometimes.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Colleen Young, Connect Director | @colleenyoung | 1 day ago

Hi @amyschwietz, I’m tagging a few members like @gesmone1 @ce1b @pantfan, who have experience with metastatic atypical lung NETs and can share their treatment experiences.

Amy, have you consulted with a pain management or palliative care physician to help with cancer-related pain?