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Any NET patients from NYC

Neuroendocrine Tumors (NETs) | Last Active: Feb 15, 2023 | Replies (24)

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Hello @laurell410, it is nice to hear from you again. I'm sure you are glad that the hernia surgery is behind you now. Now that your biopsy results have determined a NET diagnosis, I would like to invite you to a NETs support group meeting hosted by Mayo Clinic. It is a virtual meeting, via Zoom, and it is a place where you can meet others with NETs and share experiences, treatments, etc. Here is the invitation for the monthly meeting that will take place tomorrow, May 5:

The Neuroendocrine Cancer Zebras meet monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time by the Florida campus of Mayo Clinic. You can join the meeting virtually using Zoom. Each meeting features an invited guest speaker. Topics include symptom and disease management as well as the emotional, physical, and financial impact of disease.

Please click the link to register in advance for this meeting:

After registering, you will receive a confirmation email containing information about joining the meeting.
Zoom online meeting

@laurell410, You mention a lot of symptoms such as loose stools, etc. that are often related to carcinoid syndrome. Has your NET specialist mentioned the possibility of carcinoid syndrome? I mention this because there are monthly injections that many NET patients receive to alleviate these symptoms.

You might ask your oncologist about these injections to see if they might help you.

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Replies to "Hello @laurell410, it is nice to hear from you again. I'm sure you are glad that..."

I am receiving octreotide injections monthly. They are trying to diagnose the cause of the nausea, vomiting and loose stool b4 starting chemo

I am unable to attend the May 5th group because I am an adjunct professor and I teach Thursday evenings 6-8pm

I get a shot every 28 days of lanreotide is this the same