"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”
A trial of telotristat etiprate for people who have symptoms of carcinoid syndrome (TELECAST)
This trial looked at telotristat etiprate (LX1606) for people who have symptoms of carcinoid syndrome.
Neuroendocrine tumours (NETs) are a rare group of cancers. These tumours make and release
This trial was open for people to join between April 2014 and April 2015. These results were published in 2018.
More about this trial
A NET produces serotonin which causes symptoms such as:
- frequent bowel movements
- tummy (abdominal) pain
- redness of the face (flushing)
This is carcinoid syndrome.
Doctors can treat carcinoid syndrome with drugs called somatostatin analogues. These drugs help. But they may stop working after a while. No other treatments were available:
- if somatostatin analogues stopped working or
- for people who couldn't or didn't want to take them
Researchers were looking for new treatments to help people in these situations. In this trial, they looked at a drug called telotristat etiprate. This reduces the production of serotonin.
This trial looked at different doses of telotristat etiprate to:
- see which doses helped relieve the symptoms of carcinoid syndrome
- learn more about the side effects
Summary of results
The trial team found telotrisat etpirate with somatostatin analogues helped people with diarrhoea caused by carcinoid syndrome.
76 people took part in the trial.
- 25 people had low dose of telotrisat etpirate
- 25 people had a high dose of telotrisat etpirate
- 26 people had a dummy drug (
Everyone had 12 weeks of treatment. This was the double blind part of the trial. After this the team told everyone which group they were in.
They then had the choice to continue with telotrisat epitrate at the high dose for another 36 weeks. This is called the open label extension period.
Before starting treatment everyone collected their urine for 24 hours. The team looked at the amount of a chemical called u5-HIAA in the urine. This chemical is made as part of the process of breaking down serotonin. Our body gets rid of it in urine.
After 12 weeks of treatment people collected their urine again for 24 hours. The team looked at the difference in the amount of u5-HIAA between these 2 urine collections.
The team found that there was a
The team compared the symptoms of carcinoid syndrome people had in each group. They found that the form and firmness of the poo was significantly better for those who had telotrisat epitrate.
Most side effects were mild or moderate. People who had telotrisat epitrate reported more side effects than those who had the dummy drug.
The most common side effects were:
- feeling or being sick
- diarrhoea or constipation
- tummy (abdominal) pain or discomfort
- bloating of the tummy
The team concluded that treatment with telotrisat epitrate for up to 48 weeks:
- was acceptable
- had few side effects
- had a lasting decrease in the level of u5-HIAA
These results plus the results of the TELESTAR trial support the use of telotrisat epitrate with somatostatin analogues in people with diarrhoea caused by carcinoid syndrome.
Where this information comes from
We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (
How to join a clinical trial
Professor Martyn Caplin
Experimental Cancer Medicine Centre (ECMC)