Searchable abstracts of presentations at key conferences in endocrinology
Endocrine Abstracts (2020) 72 P1 | DOI: 10.1530/endoabs.72.P4

UKINETS2020 Poster Presentations (1) (16 abstracts)

Telotristat in the management of Carcinoid diarrhoea – real world experience of patients from an ENETs centre of excellence in Neuroendocrine tumours.

Amardeep Khanna 1, , Nicole Cianci 4 , Husnain Abbas Shah 4 , Ashish Goel 4 , Asma Jebril 4 , Jessica Chauhan 4 , Michelle Pipe 4 , Shishir Shetty4 4, , Christopher Weston 5 , Hema Venkataraman 4 , Stacey Smith 4 , Suzanne Vickrage 4 , Joanne Kemp-Blake 4 & Tahir Shah 4

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1Institute of Liver Sciences, Kings College Hospital, London, UK; 2Liver Unit, Queen Elizabeth Hospital, Birmingham, UK; 3Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK; 4University Hospitals Birmingham, Birmingham, UK; 5Institute of Immunology and Immunotherapy, Birmingham University, Birmingham, UK


Carcinoid syndrome occurs in 20% patients, presenting with flushing, abdominal pain, diarrhoea, and wheeze and can be challenging to manage. The standard of care for carcinoid syndrome is somatostatin analogues (SSAs) with add-on Creon, codeine and loperamide therapy. Nonetheless, half of patients experience debilitating diarrhoea. Telotristat-ethyl is a peripheral tryptophan-hydroxylase inhibitor approved for treatment of diarrhoea, supported by Phase 3 clinical trials but lacking in real-world data. Here we present our experience on effectiveness of Telotristat on carcinoid diarrhoea in the largest cohort of patients outside a clinical trial. The primary outcome was reduction in stool frequency (number/day) of >30%, as defined in most studies. Data was collected retrospectively from an electronic database. We included 31 patients (25M, 6F; Median age 69 (45–85) years) {study group} on Telotristat and 10 patients on maximum dose of 2 weekly SSAs but no Telotristat (6M, 4F; Median age 67 (49–79) years) {control group}. The mean (range) duration of treatment in each group was 258 (15–479) and 689 (219–1446) days, respectively. Primary end-point was achieved in 82% (23/28) patients on Telotristat with median-percentage reduction stool frequency of 60% (IQR 50–69), compared to 28% (2/7) (22 (-30 to 55)%) in the control group, (OR-11, 95% CI 1.71–77.1). The pre and post values were compared by Wilcoxon signed rank test. There was a statistically significant change in pre and post stool frequency in Telotristat group {5(3–60) to 2(1–2.5), P<0.01}. A significant reduction in Urinary 5-hydroxyindoleacetic acid (5-HIAA) was noted in the Telotristat group (n=28) {740 (342–1462) to 334 (125–709) μmol/24 h, P<0.001}. Interestingly, change in stool frequency did not correlate with delta HIAA (ρ:027, P=0.2). The delta change in stool frequency between the two groups was significant (P=0.04). No significant difference (P=0.185 (Fisher’s exact test)} in mortality was seen between Telotristat {16% (5/31)} and the control group {40% (4/10)}. One patient discontinued Telotristat due to mood changes, which reversed after stopping the drug. In conclusion, our real-world study supports the effectiveness and safety of Telotristat to treat carcinoid diarrhoea in patients not responsive to SSA.

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