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Neuroendocrine Tumors (NETs) | Last Active: 12 hours ago | Replies (411)
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@hopeful33250

Hello @sophiarose

Personally, I have never taken either octreotide or lanreotide so I do not know the difference between the two. I understand that one is easier to inject than the other. Here is an article from the National Library of Medicine about the two different medications, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6643159/. I hope some of our members who have used these meds will be able to answer this question for you. Also, this might be a good question to ask the NETs support group on the first Thursday of each month.

The fact that the primary NET is unknown is a common problem. Have you had a Gallium 68 scan to try to determine where the primary is located?

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Replies to "Hello @sophiarose Personally, I have never taken either octreotide or lanreotide so I do not know..."
sophiarose | @sophiarose | Jul 18, 2022

Thank you

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carcinoid23462 | @carcinoid23462 | Sep 6, 2022

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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