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Welcome to the NETs Group! Come say hi.

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

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@colleenyoung

Welcome to the NETs group on Mayo Clinic Connect, @amandafl. This is so exciting to have the online support group here mix with the in-person support group members from Mayo Clinic in Jacksonville, Florida.

NETs support group in JAX meets monthly to discuss a variety of topics such as symptom and disease management as well as the emotional, physical, and financial impact of the disease, featuring invited guests. People who are not able to attend in person can join by phone, using this number. Call 866-365-4406 (International +1 303 248 9655), access code 9537292#.

For anyone wishing to suggest a topic, post your ideas to the discussion Amanda started here:
- What topics do you want for the Neuroendocrine Support Group? https://connect.mayoclinic.org/discussion/what-topics-do-you-want-for-the-neuroendocrine-support-group/

Amanda, I'd like you to also meet @hopeful33250 @ahtaylor @joannem and @tomewilson to name a few members who have been living with NETs or caring with someone with NETs. Amanda, what treatments have you had? How are you doing today?

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Replies to "Welcome to the NETs group on Mayo Clinic Connect, @amandafl. This is so exciting to have..."

@hopeful33250 @ahtaylor @joannem @tomewilson It’s nice to meet everyone. I will be happy to connect with anyone or answer any questions you have about the support group or anything else.
I am on a number of things including Lanreotide, Octreotide, blood pressure medications, Creon, Bentyl, and Xermelo to name a few. I have terrible syndrome that includes flushing, high or low blood pressure, Tachycardia, and the typical bathroom issues. I am more under control after learning from the other patients what works for them and what doesn’t.
Today has been an ok day. Switching my Lanreotide from every 4 weeks to every 3 weeks has helped a lot.