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DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Neuroendocrine Tumors (NETs) | Last Active: Dec 28, 2024 | Replies (14)
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@lrittmiller

Anyone diagnosed with DIPNECH? I’ve had 3 injections of Octreotide so far. I started having GI symptoms at first, but recently I’m having periodic chest pain.

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Replies to "Anyone diagnosed with DIPNECH? I’ve had 3 injections of Octreotide so far. I started having GI..."
Colleen Young, Connect Director | @colleenyoung | Dec 28, 2024

@lrittmiller, how are you doing? Was your team able to address your concerns about periodic chest pains? Are you still having them?

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Zebra | @californiazebra | Dec 28, 2024

I’ve been taking octreotide injections for DIPNECH and lung NETs for 4 years. No GI issues or chest pain from it. My side effects are fatigue, blood sugar spikes, low heart rate and BP, hair thinning, injection site tender for a few days. It has helped my respiratory symptoms so much it’s a good trade off. Side effects often improve over time. Stay hopeful.

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