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Neuroendocrine Tumors (NETs) | Last Active: Nov 29 1:22pm | Replies (429)

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@carcinoid23462

I was diagnosed with Carcinoid Cancer w/an unknown primary in 2003. For 3 years I was on a pump 24/7 with Sandostatin and 2 Sandostatin injections every 2 weeks. After my diagnosis, my doctor had an Interventional Radiologist examine my liver for tumors. He found 3 of varying sizes which he proceeded to 'kill'. Those have not returned as far as I know.

The flushing has left several 'red vein' spots on my face of varying sizes. I use foundation to cover them when I need to look my best. Other days, I just ignore them.

I still receive 1 Sandostatin injection every 2 weeks to try to control the flushing & progression. From what other English patients have told me in the past, difficulties with Lanreotide is about the same as Sandostatin. The one thing I do know from past relationships with English patients, is that unless you have funds to pay for additional treatment, the normal limit of Lanreotide is 1 injection every month. I hope that has changed by now. If I had lived in England, I'm not sure I would still be here.

Wishing better days for everyone!
Sandi

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Replies to "I was diagnosed with Carcinoid Cancer w/an unknown primary in 2003. For 3 years I was..."

@carcinoid23462
Hello Sandy

I appreciate you sharing your treatments for carcinoids. You mentioned that the doctor killed the liver tumors. Would you share what type of procedure was used on the liver tumors?

Hi Sandi
You are a blessed person 19 year. Wow!!!!
I was on lanreotide and had to stop it did nothing but make me sicker and now in PT for encapsulated abscess
I am now on octreotide and the diarrhea and flushing is gone
However neither drug has stopped the tumors in my liver from growing and more arriving
I have an unknown primary net tumor
Question how did they kill your liver tumors?
Thank you for your response
Best wishes