What it’s like on a drug trial

We find that our service users are always interested to hear about new drug trials and what happens if you join one. Here Ian Terry (pictured) writes about his experiences:

Ian Terry19 months after a pleurectomy operation I still have no symptoms, but a recent scan revealed some regrowth of my mesothelioma. I was offered the standard NHS immunotherapy at my local hospital or the Evolve-Meso trial at the Hope Cancer Trials Centre at the Leicester Royal Infirmary. This is being run by Professor Fennell and Dr Dulloo.

After a series of very extensive screening tests and scans over six weeks I have been accepted onto the trial. The computer drew lots for my treatment.  I was “randomised” onto the standard immunotherapy treatment which I would have had locally. The trial drug is being tested in combination with chemotherapy, to see if this is more effective.

I’m a bit disappointed not to get the new drug. The doctors must hope it will be better than the standard treatment or they wouldn’t be trialling it. But at least I am spared chemo. Another consolation is that so far I don’t feel any significant side-effects from the immunotherapy , though I understand that, like the clinical effects, these could build up over time. Another plus is that the expertise and care here are outstanding. Professor Fennell is world-class in this field.

Taking part in the trial involves 80 visits to Leicester over two years – it’s 70 miles away!  But, all trips to Leicester are by taxi and I stay in a hotel the night before treatment days, which are every 3 weeks. There are lots of other visits for blood tests and scans by the trial team.  I get far more monitoring and testing than if I were at my local hospital. I also get access to any future drug trials that may arise.

Everything is paid for by Astra Zeneca. 600 people are on this trial in 18 countries.  No wonder drugs are so expensive!

Editor’s note: To find out more about new and on-going trials for mesothelioma treatments please go to the MesotheliomaUK website here.

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