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4 treatment options from my doctor, which one should I start with?

Neuroendocrine Tumors (NETs) | Last Active: 19 hours ago | Replies (75)
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@jlu

Now I am back with some updates. Since Lutathera treatment in 2023, I had 15 fractions of IMRT (Intensity-Modulated Radiation Therapy) to increased paratracheal lymph node in 2024, and 10 fractions palliative RT to my lower lumbar spine/pelvis and the right lateral ribs recently, My recent PET/CT scan showed not enough uptake even all my bone metastasis. My oncologist did not recommend the second Lutathera treatment, instead of CAP/TEM chemo. From what I understand, CAP/TEM (capecitabine and temozolomide) is a chemotherapy combination used to treat neuroendocrine tumors (NETs). It's often used to treat pancreatic and lung NETs, and may also be used for gastrointestinal NETs.

It would be really encouraged and appreciated if there is any positive result from bone metastasis treated by CAP/TEM.

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Replies to "Now I am back with some updates. Since Lutathera treatment in 2023, I had 15 fractions..."
Teresa, Volunteer Mentor | @hopeful33250 | 19 hours ago

Hello @jlu,

To meet others with bone mets, I would encourage you to direct your questions to the following discussion group where you will meet others who also have NET bone Mets:
https://connect.mayoclinic.org/discussion/net-in-the-spine/?commentsorder=newest#chv4-comment-stream-header
Here you will meet others such as @vanhauen. who has taken CAP/TEM, @gsm13161 and @kwan.

Are you currently being treated by a NET specialist?

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