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DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Posted by lrittmiller @lrittmiller, Jul 18, 2024

I was diagnosed with DIPNECH a few days ago, following lung biopsies. I will be having a second PET scan, called Detectnet Dotatate on August 6th. I haven't felt like myself since the biopsies and I'm wondering if it caused a hormonal reaction.
Anyone know?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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jhhaas | @jhhaas | Jul 20, 2024
In reply to @hopeful33250 "Seeing a NETs specialist is the best way to ensure that you are on the right..." + (show)
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Seeing a NETs specialist is the best way to ensure that you are on the right track, @jhhaas. NET specialists are few and far between. If there is not one in your immediate area, even a virtual consultation would be a good plan.

Mayo Clinic has NET specialists at all three of their locations. If you are interested in seeking a second opinion at Mayo, here is a link with information on obtaining an appointment, http://mayocl.in/1mtmR63.

If, for any reason, you cannot be seen at a Mayo location, here is list of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

I look forward to hearing from you again. Will you post again with questions or updates?

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Thank you, and yes, I will try to update. I am not near Mayo, but I am within reach of Philadelphia and New York, which is where I had my surgery at MSK. Looks like Penn Med and Temple have some NET specialists and I have gotten a few names. What I have heard is that some net specialists only see Gastro net cases. So I want to see if there is a Lung Net Specialist. But as long as they are net specialists, and they will see me, I will be happy to go. Thanks again. And honestly, Now that I know about nets, it has me wondering about some others in my family in the past that had various cancers and a lot of Gastro issues. It does make one wonder

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lrittmiller | @lrittmiller | Dec 18, 2024

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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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 28, 2024
In reply to @lrittmiller "Anyone diagnosed with DIPNECH? I’ve had 3 injections of Octreotide so far. I started having GI..." + (show)
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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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@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
In reply to @lrittmiller "Anyone diagnosed with DIPNECH? I’ve had 3 injections of Octreotide so far. I started having GI..." + (show)
Profile picture for lrittmiller @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.

Jump to this post

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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