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 may still be experiencing Carcinoid Syndrome. Managing both conditions can be challenging but that doesn’t mean you have to settle for a lower quality of life.

Your healthcare team can help

There are a few ways to help improve your lifestyle while living with Carcinoid Syndrome. The most important thing to do is communicate with your healthcare team. Most doctors are confident they can help their patients manage symptoms, but they need to be made aware of them in order to do so. Some key points you should communicate to your healthcare team are:

  • Any symptoms you are experiencing
  • How much of an impact Carcinoid Syndrome has on your daily life
  • Your hopes for improvement with symptom control
I felt better after discussing how my symptoms were impacting me with my doctor.
– Person with Carcinoid Syndrome
Remember: Better symptom control starts with an honest conversation between you and your healthcare team.

Since Carcinoid Syndrome is caused by high levels of hormones, a primary goal of treating Carcinoid Syndrome is to reduce the levels of these hormones. Certain SSAs can help do that but may not fully control the symptoms. Fortunately, advancements in treatment are helping to better manage the symptoms of Carcinoid Syndrome.
Now, people with Carcinoid Syndrome can better control their disease-related diarrhea with new oral therapies.

Are your symptoms out of control?

In the largest-ever US survey conducted about Carcinoid Syndrome, 1/3 of people with Carcinoid Syndrome reported being dissatisfied with their current treatment.* If Carcinoid Syndrome is interfering with your life despite being on treatment, you may want to discuss new options with your doctor.

Below are signs that your Carcinoid Syndrome might not be well controlled.
Take note of which ones apply to you and discuss them with your doctor at your next appointment.
  • Increasing need for short-acting SSA 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

It is important to discuss with your doctor the potential benefits and side effects of any therapy.

*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.

SSA=somatostatin analog.

CHECK YOUR KNOWLEDGE OF NETs AND CARCINOID SYNDROME
TRACK YOUR SYMPTOMS WITH THE CARCINOID SYNDROME IMPACT TOOL

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