Clinical Trial: Treatment of IBS with diarrhoea – titrated ondansetron (TRITON)

I was never diagnosed with Irritable Bowel Syndrome (IBS) but sometimes I feel like I now have it.  I know many others feel the same way.  But when I look at the alternatives, I can’t help thinking it’s a small price to pay given that one of them might be a slow degrading quality of life until shuffling off  this mortal coil. If I had the choice again, I would still take the surgery.

Before the article continues, let me be clear – I’m not suggesting this is a potential treatment for NET patients with post abdominal surgery side effects or side effects of any other treatment, nor am I suggesting it’s a potential treatment for those with carcinoid syndrome diarrhea.  I publish it because there is a connection to serotonin and it may be a useful read for the more curious amongst us. In fact, since publishing I’ve been contacted by several people telling me they are aware of the drug having been treated with it for nausea.

I once wrote about IBS in an article entitled “Were you irritated by your misdiagnosis” (click the link to read).  This was written after I completed an online IBS course.  I wrote the article in a balanced way in an effort to explain why many patients are misdiagnosed with IBS in the lead up to the correct diagnosis some time later.  This is an issue with other conditions, not just NETs.  It was also designed to capture IBS readers and offer them a chance to review their diagnosis to ensure there wasn’t anything else they might try to double-check (markers and scans mainly).

A new drug on trial for IBS

Given the connection between NETs and IBS, I was really interested to see this in a UK national newspaper and I subsequently researched for some formal papers to back up the headline.  What I found most interesting was the suggestion that a drug designed to inhibit serotonin was involved (…… but read on rather than get too excited).

Diarrhea – the IBS and NET Effect

Diarrhea is a big feature of IBS although there are several types including diarrhea mainly, constipation mainly and a mixed of both – you can read more in my IBS article linked above.   Diarrhea is also a big feature of several of the NET Syndromes, in particular Carcinoid Syndrome.  It is known that the cause of carcinoid syndrome diarrhea is the oversecretion of serotonin.  This makes is quite distinct from other reasons for diarrhea, including but not limited to side effects of intestinal surgery (as one example).

Clinical Trial: Treatment of IBS with diarrhoea – titrated ondansetron (TRITON)

What is ‘ondansetron’. It’s actually a powerful anti-sickness drug given to cancer patients and some of you may recognise it as ZOFRON.  Interestingly it’s a serotonin receptor (5-HT3) antagonist (5HT3-RA) for antineoplastic chemotherapy-induced nausea and vomiting. Ondansetron is a drug which blocks the 5-HT receptor, which is used to treat nausea and sickness, and has an excellent safety record.  Other 5HT3-RAs include Tropisetron, Granisetron, Dolasetron, Palonosetron, Ramosetron (the group of drugs in the class known as 5HT3-RAs are known a ‘setrons’).

It is being offered to those with irritable bowel syndrome (IBS), helping to ease the most embarrassing and painful symptoms of the condition.  According to the Daily Mail, if the trial is successful, it could throw open the doors to the first targeted treatment for the millions of IBS patients with bloating, abdominal discomfort and urgent bowel movements. Two people on the trial are featured in the newspaper article reporting good outcomes.

Information on the Trial.  Researchers are hoping to recruit 400 volunteers in the UK aged over 18 who have IBS to take part in the 12-week study.  You can read more about the trial in the reference documents below.

Read more here:

1. The Daily Mail article. Click here.
2. Trial Sponsor site.  Click here.
3. Clincial Trial Document.  Click here.

Would this work for carcinoid syndrome diarrhea?

I guess many of you will now be thinking that but I advise not to get too excited as things are never that straightforward.  However, if I was a pharmaceutical involved in NET research, I would certainly be watching this trial carefully.  None of us know the interaction between NETs, NET treatments and titrated ondansetron and its mechanism of action. It may be more directed at brain and central nervous serotonin rather than gut serotonin which is mainly the issue with carcinoid syndrome diarrhea, i.e. it may not work in the same way and/or have the same effect as other approved NET drugs such as somatostatin analogues (Octreotide/Lanreotide) and tryptophan 5-hydroxylase (TPH) inhibitors such as XERMELO.

Still, it’s an exciting trial.

I will keep this article live for any developments.  Finally please note this is not in any way medical advice and not a recommendation to try these drugs to control your diarrhea.

Thanks for reading

Ronny

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Ronny Allan is an award winning patient leader and advocate for Neuroendocrine Cancer.

 

 

I’m not sick, I just have cancer

Opinion. I receive many messages from people across the world. Recently, one person asked me if I saw myself as a sick person. I found it a really interesting question because someone with cancer must be sick, right?

When I was diagnosed, I really didn’t feel unwell, not enough to consider myself a ‘sick person’. Prior to that, I suppose like everyone else on the planet, I had normal day-to-day stuff come along but that always settled in days or weeks. But never enough to call myself a sick person other than as a temporary label. Quite often I would ignore the illness and continue working and also continue normal day to day activities. In hindsight, some of these issues might have been connected to my cancer but that’s the nature of medicine sometimes. I try not to reflect too much on what might have been.

Even after diagnosis of advanced and incurable cancer, I still didn’t feel unwell and continued to work and go on holiday. Chris and I jetted off eight weeks after the diagnosis, there was a nice gap right in between starting daily octreotide and a liver embolisation. OK the subsequent procedures and surgeries I had were tough and I guess if you looked at me lying in a hospital bed with a dozen pipes going in and out of my body, you would quite rightly assume I was a sick person. But as I said above, it’s only ever been a temporary label because when I was stronger, I went back to work, continued going on holiday and continued going about my life in a relatively normal fashion. I’m not special or unique as millions of cancer patients do something similar. Sure, I made changes, but sick or not, don’t we all make adjustments to suit changes in circumstance?

Despite the furore that erupts in reaction to the ubiquitous invisible illness clichés we see, I don’t really mind ‘looking well’, I mean who wants to look unwell? I’m very happy to look well, and very happy to feel well. I’m not seeking pity or victim status by demanding people to say that I have to look unwell simply because I have cancer. While we’re on the subject of labels, I have cancer but please don’t call me a ‘sufferer’ – I’m far from being a sufferer, an old-fashioned term for those with illness and I’m thankful to see less use of the term today.

I can’t undo my diagnosis of advanced and incurable cancer and I refuse to retreat into a corner feeling sorry for myself.  I have cancer but I can still get on with living my life.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Ronny Allan is an award winning patient leader and advocate for Neuroendocrine Cancer.