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Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver
Neuroendocrine Tumors (NETs) | Last Active: Oct 31 7:28pm | Replies (113)Comment receiving replies
Ask your doctors about adding Temozolimide to your regimen. It is an oral chemotherapy that is combined with the Lanreotide/Sandostatin injections and is usually well tolerated. Take solace, I have stage 4 advanced metastatic Paraganglioma, multiple surgeries, radiation and still the oncologist feels I can live a long life. Stay on top of the dr. appointments and subsequent treatment decisions and know that neuroendocrine cancers are normally slow progressing. Also talk to the dr. about having genetic testing is it can assist future treatment decisions.
God bless you☀️☀️☀️
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Hello @gsm13161,
I see that you mentioned genetic testing and said that, "it can assist future treatment decisions." Is genetic testing something that you have done?
As I have not heard about genetic testing being used for the treatment of NETs, I would be interested in knowing if the testing helped determine the treatment that you are now having. Please share as you are comfortable doing so.