Exciting Updates · New Resources · New Site Coming In 5 Days!

Carcinoid Syndrome Treatment

Carcinoid Syndrome Treatment

There is currently no cure for carcinoid syndrome. Even if your cancer therapy reduces the size of your tumor, you still may experience carcinoid syndrome. That's why it's important to stay on top of your symptoms to manage this syndrome as best you and your healthcare team can.

Since carcinoid syndrome is caused by high levels of certain hormones, a primary goal of treating carcinoid syndrome is to reduce the levels of these hormones. Certain somatostatin analogs (SSAs) can help do that but may not fully control the symptoms. In the largest-ever US survey conducted with sufferers of carcinoid syndrome, most reported being dissatisfied with carcinoid syndrome treatments.*


70%
report that the current treatments are not doing enough to control symptoms
97%
experience symptoms at least once a month
51%
reported their carcinoid syndrome temporarily improved after SSA therapy, but got worse over time


“I would like more options to effectively treat my carcinoid symptoms.”

Patient with carcinoid syndrome

Signs that your carcinoid syndrome might not be well controlled:

  • Increasing need for short-acting octreotide injections or antidiarrheal medication
  • Increasing the dose of your long-acting SSA injections (for example, going from 30 mg to 40 mg of octreotide)
  • Shortening the time between your long-acting SSA injections (for example, going from getting these injections every 28 days to every 21 days)
  • The need for major changes to your diet or mood to control symptoms
  • Canceling or missing planned events due to symptoms
  • Quitting or losing your job due to symptoms

SSA therapy over time may cause harmful effects like abnormal blood sugar levels, gallbladder damage, and low thyroid levels.

Learn from the experts:

See the treatment goals for carcinoid syndrome.

Watch Now.

Complete the Carcinoid Syndrome Impact Tool to see how your symptoms are affecting you, and get tips for managing carcinoid syndrome.


*The Carcinoid Impact Survey was developed by Carcinoid Cancer Foundation (CCF), Neuroendocrine Cancer Awareness Network (NCAN), Neuroendocrine Tumor Research Foundation (NETRF), Healing Net Foundation, Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS), NorCal CarciNET Community, and Big Apple NETs in collaboration with Lexicon Pharmaceuticals, Inc. The survey was conducted in 2016 with over 500 patients and caregivers as well as 150 oncologists.