1. < Neuroendocrine Tumors (NETs)
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NET's Metastasis to Brain

Posted by markmark007 @markmark007, Oct 7 11:54am

1. Net's found in 2017 - pancreas / small intestine co- primaries
2. Lanreotide until 2023 when progression was identified including bone metastasis.
3. 4 PRRT sessions completed September 2023
4. Octreotide since September 2023 -
5. September 2025 Ga-68 PET scan showed several new locations in the head area, previously identified multiple other bone lesions while lesions in the pancreas & liver appear to be "stable"
6. Additional PRRT sessions recommended - insurance approval pending
Question:
has anyone had experience dealing with metastasis to the brain?
Thanks.
Mark

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markmark007 | @markmark007 | Oct 9 11:10am
In reply to @tomrennie "@markmark007 Nothing specifically for it. I was on capecitabine and temozolomide, captem, for 13 cycles which..." + (show)
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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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@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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Turkey, Volunteer Mentor | @tomrennie | Oct 10 2:14pm
In reply to @markmark007 "@tomrennie Many thanks - After additional discussions with the radiologists, the spots detected by the PET..." + (show)
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@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 Will the additional PRRT sessions address the skull metastases? I haven't had PRRT, so I am learning through you. Thanks.

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markmark007 | @markmark007 | Oct 11 12:10pm

While the PRRT session(s) have not been scheduled, all of the documentation I have reviewed would indicate a "yes" to your question. The previous 4 sessions in 2023 did stabilize my "tumor burden" - so I will await the results following new treatment(s).
Thanks,
Mark

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rkklinger | @rkklinger | Oct 12 3:28pm

My husband has several tumors in his skull. His 1st tumor between the illium and bowel was removed in 1995. 12/30/22, he was rediagnosed and NETS were discovered throughout his skull and body. He is Stage 4. He has been on Lanriotide since January 2023 every 28 days. We just returned from his 6 month checkup at Mayo. The CT showed everything stable. The last MRI of his brain was 1 1/2 years ago. There are two large tumors near the brain blood barrier but doctors agree that they are meningoimas and are not concerned. He will stay on the Lanriotide and be rechecked in 6 months. He lives a very normal life and we are thankful that there have been no increases in tumors or in size of tumors.

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markmark007 | @markmark007 | Oct 13 3:05pm
In reply to @rkklinger "My husband has several tumors in his skull. His 1st tumor between the illium and bowel..." + (show)
Profile picture for rkklinger @rkklinger

My husband has several tumors in his skull. His 1st tumor between the illium and bowel was removed in 1995. 12/30/22, he was rediagnosed and NETS were discovered throughout his skull and body. He is Stage 4. He has been on Lanriotide since January 2023 every 28 days. We just returned from his 6 month checkup at Mayo. The CT showed everything stable. The last MRI of his brain was 1 1/2 years ago. There are two large tumors near the brain blood barrier but doctors agree that they are meningoimas and are not concerned. He will stay on the Lanriotide and be rechecked in 6 months. He lives a very normal life and we are thankful that there have been no increases in tumors or in size of tumors.

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@rkklinger
Many thanks for the information - much appreciated
Pleased he is doing well -
Mark

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markmark007 | @markmark007 | Nov 17 12:45pm
In reply to @tomrennie "@markmark007 Nothing specifically for it. I was on capecitabine and temozolomide, captem, for 13 cycles which..." + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

@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?

Jump to this post

@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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