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Updating about My Lanreotide Injections & CT Scan

Neuroendocrine Tumors (NETs) | Last Active: Jun 15 10:40am | Replies (61)
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@californiazebra

Hi @nana120

That's such great news to be stable!!! Sounds like the lanreotide is doing its job! I'm curious why they only plan to do this for 10 months. I've been taking the octreotide injections for 2.5 years for lung NETs/DIPNECH and don't intend to stop unless it becomes ineffective. It's not only keeping my tumors stable, but it has really helped my respiratory symptoms.

Thanks for updating us!

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Replies to "Hi @nana120 That's such great news to be stable!!! Sounds like the lanreotide is doing its..."
nana120 | @nana120 | Sep 27, 2023

I’m not sure if the 10 months was an insurance approval item or not, but my oncologist told me before yesterday’s injections that he would recommend me staying on them indefinitely. Now if I could gain some of the weight l have lost and continue to do so I would feel better about staying on them. How have you stayed on them so long with the diet limitations? BTW, I love chose Zebra as your name. I don’t know if you saw that one of the mentors gave me the nickname of unicorn zebra due to my apparently being the only person with both CLL and NETs. Not really something that I’m happy to be know for, but it’s what it is! Thanks for your encouragement!

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