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NET's Metastasis to Brain

Neuroendocrine Tumors (NETs) | Last Active: Nov 17 12:45pm | Replies (16)
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@markmark007 Nothing specifically for it. I was on capecitabine and temozolomide, captem, for 13 cycles which took about a year. I now have been taking just capecitabine for a little over two years. The skull marks on the scans went away after the second scan so approximately six months. They have not appeared in a scan since. Do you have anything showing up on your skull?

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Replies to "@markmark007 Nothing specifically for it. I was on capecitabine and temozolomide, captem, for 13 cycles which..."
markmark007 | @markmark007 | Oct 9 11:10am

@tomrennie
Many thanks -
After additional discussions with the radiologists, the spots detected by the PET were not on the brain but on my skull - unfortunately, they are new.
My oncologist is suggesting additional PRRT sessions in addition to the 4 completed in September 2023.
I continue to seek other experiences just as yours.
Many thanks again -
Mark

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markmark007 | @markmark007 | Nov 17 12:45pm

@tomrennie
I am so sorry for my delayed response -

For clarification: Latest PET / Ga-68 scan (September 2025) showed 6 - 7 skull lesions for the first time (for what its' worth, low SUV's ~ 5)
The NETs have metastasized to my bones starting in 2018.
The nuclear medicine docs have recommended 2 additional PRRT sessions ( I completed 4 in 2023).

Thanks again,
Mark

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