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Differentiating Carcinoid syndrome from MCAS?

Neuroendocrine Tumors (NETs) | Last Active: Jun 6 8:56am | Replies (17)
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@abby84

I found out 3 years ago that I have net cancer. Originated in small intestines and went to the liver. About 30 tumors. For the first year I only had been taking sandostatin lar for diarrhea and flushing. Didn't help at all. My diarrhea is keeping me from going anywhere. This supposedly is a slow growing cancer but I have had to go through 3 embolizations where they go in and cut the blood flow to the tumors. Last scan showed new tumors so they put me on ever points 10 mg. Two months and side effects kicked in and they decided to lower dosage 5 mg. Well, it's been two months and of course same side effects. Is there anyone out there with similar situation?

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abby84 | @abby84 | Apr 24, 2023

Everolimus

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Teresa, Volunteer Mentor | @hopeful33250 | May 15, 2023

Hello @abby84 and welcome to the NETs discussion on Mayo Connect. It sounds as if you have had a lot of treatments and that you are still having difficult symptoms.

Have you had a consultation with a NET specialist? A NET specialist is an oncologist who specializes in diagnosing and treating NETs. They are especially helpful in knowing the latest and best treatments available.

Mayo Clinic's three facilities all have NET specialists. If you feel a consultation (either virtual or in-person) might be helpful here is information about appointments at Mayo, http://mayocl.in/1mtmR63.

If you are not able to get a consultation at Mayo, here is a list of NET specialists throughout the U.S. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

I hope you are able to find some relief from your symptoms. Will you let me know how you are doing?

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