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Is everyone with pNETs on creon?

Neuroendocrine Tumors (NETs) | Last Active: Apr 26 11:19am | Replies (20)
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@kristys72

Hello. Diagnosed almost 2 years ago. Had one year of uncontrollable diarrhea. Diagnosed with IBS at first. Finally had a CT scan that showed a 2cm tumor on the pancreas with multiple lesions in the liver. Was put on Creon at that time
Treatment has been monthly Lanreotide injections and just recently moved to PRRT treatment. I guess chemo is down the road if needed.
Wonder why our treatment is different than yours. Everyone seems so different with this type of cancer
I like being on here to learn from everyone else. Thank you

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Teresa, Volunteer Mentor | @hopeful33250 | Oct 22, 2023

I'm glad that you are learning from everyone here! Oten your treatment depends on the oncologist you are seeing. Are you currently seeing a NET specialist? It is also important to remember that each person's NET journey is different. Much of the treatment depends on the location and the staging of the NET.

Having at least one consultation with a NET specialist is very important. General oncologists don't have the same kind of experience as specialists do.
Mayo Clinic has NET specialists at all three of their locations. Here is a link with appointment information if you would like a consultation (either in-person or virtual). http://mayocl.in/1mtmR63. If an appointment with Mayo is not possible, here is a list of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

How are you feeling now? Have your symptoms been relieved with the Creon and monthly Lanreotide injections?

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