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Neuroendocrine Carcinoma with Liver Metastasis

Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (48)
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@amygirl

I have NET in my liver but was told chemo does nothing. Wondering if u also have another form of cancer also.

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Replies to "I have NET in my liver but was told chemo does nothing. Wondering if u also..."
sophiarose | @sophiarose | 1 day ago

I have metastatic NET
Did they tell you about Afinitor? It is a form of chemotherapy
There are many people in it with good outcomes
I took it for 9 weeks however I got one of the rare side effects and had to stop
But other than that it was tolerable
There is also PRRT which I just finished and will get scanned in February
There is a lot of treatments out there
Be strong
Keep fighting
I myself have gotten 3 didn’t options and I am researching a 4th
Best wishes

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ronjake | @ronjake | 1 day ago

What about CapTem which is a pill form chemo specifically for NET. I just finished my fourth cycle on it, but after my third cycle had a CT scan and all of my measureable tumors have shrank, some by half. My Dr is actually shocked that it is working so well and wants some of my blood so they can test to see why it is working

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