1. < Neuroendocrine Tumors (NETs)

Anyone have a neuroendocrine tumor (NET) in the spine?

Posted by andy2020 @andy2020, Feb 7, 2023

Does anyone else have a NET in their spine, I cant seem to find anyone? Its just to share experiences and maybe help each other

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

willam | @willam | Oct 14, 2023

quick question @gsm13161 --what specific bloodwork was abnormal? thank you

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1 reply
gsm13161 | @gsm13161 | Oct 14, 2023
In reply to @kwan "@gsm13161, Hope the cyberknife operation has kept your condition stable. With mets to spine, were you..." + (show)
@kwan

@gsm13161,
Hope the cyberknife operation has kept your condition stable. With mets to spine, were you able to have any surgery?
My son has pNets which mets to nearby lymph nodes. He is undergoing PRRT and hope for shrinkage of the pNETs so that surgery can be done. Blood work shows activities shown in his spine lesion area. Wonder if mets to spine will make it irresectable.

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I had surgery in 2018 for spine nets at T-10. Since then I have numerous spine Mets in C spine, T spine, and L spine. Cyberknife has kept everything relatively stable. Lucky metastatic Paraganglioma is slow progressing. Also get exgeva injection every 12 weeks for other bone Mets. Good luck with the prrt therapy. My dr. has mentioned I am a candidate for prrt but the disease hasn’t progressed to where they want to use it.
Best wishes

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kwan | @kwan | Oct 15, 2023

@gsm13161 thanks for your prompt reply. Will keep your treatment in mind. Best of luck to us all

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gsm13161 | @gsm13161 | Oct 22, 2023
In reply to @willam "quick question @gsm13161 --what specific bloodwork was abnormal? thank you" + (show)
@willam

quick question @gsm13161 --what specific bloodwork was abnormal? thank you

Jump to this post

Chrogranin A is extremely elevated as is dopamine, norepinephrine and metanephrine.

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gsm13161 | @gsm13161 | Oct 22, 2023
In reply to @kwan "@gsm13161, Hope the cyberknife operation has kept your condition stable. With mets to spine, were you..." + (show)
@kwan

@gsm13161,
Hope the cyberknife operation has kept your condition stable. With mets to spine, were you able to have any surgery?
My son has pNets which mets to nearby lymph nodes. He is undergoing PRRT and hope for shrinkage of the pNETs so that surgery can be done. Blood work shows activities shown in his spine lesion area. Wonder if mets to spine will make it irresectable.

Jump to this post

I had surgery in 2018 for t-10 lesion but since have had cyberknife on additional spine Mets. MRI’s show relatively stable disease. Also had robotic surgery on the liver in 2019 and 2023. Still not on chemo. The oncologist is staying with Sandosatin injection as the cancer is over all stable per recent pet imaging.

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willam | @willam | Oct 23, 2023

@gsm13161

thank you very much--very helpful
janine

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