A New Drug to Bring Hope to Carcinoid Syndrome Sufferers

Carcinoid tumors usually develop in the gastrointestinal tract or the lungs. Because they are very slow-growing, patients may remain symptom-free for a long period of time.

While this is good, it’s also bad, because when the tumors are advanced, they begin to secrete chemicals that cause what is called carcinoid syndrome.

The most common chemical released into the bloodstream is serotonin. Urine tests, along with blood and imaging tests are preformed to confirm the diagnosis.

The most common symptoms of carcinoid syndrome are:

  • Diarrhea that can be so severe that the patient’s quality of life is compromised
  • Facial flushing
  • Difficulty breathing

Usually, the primary cancer—the carcinoma tumors—is treated. When successful, the symptoms of carcinoid syndrome are relieved. Treatments are tailored to the individual patient and can include surgery, chemotherapy, biological therapies, and/or medications that help stop the secretion of chemicals from the carcinoid tumors.

Recently, pharma company Lexicon Pharmaceuticals was asked by the FDA to allow more time while they review the efficacy of a new drug called Telotristat Etiprate to treat carcinoid syndrome.

Lexicon agreed. The drug is designed to block the tumors from creating serotonin, and it’s the first of its kind. If successful, it may help patients to gain more control over their lives by reducing the symptoms of carcinoid syndrome. The drug has been granted orphan status by the FDA with a target date of late February 2017 for it’s release.


Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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