CLL Support Association
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Find a Cure for Me - BBC 12 Feb

Find a Cure for Me - BBC 12 Feb

If you follow CLLSA on Facebook or Twitter or listen to BBC Radio 4 – you may already know that award-winning investigative journalist Simon Cox this week aired a report on his quest for a cure for CLL following his diagnosis at the age of 37. If you missed it, you can catch it on bbc.co.uk/programmes/b09qcybv or listen to BBC Radio 4 at 21:00 hrs on Monday 12th February when the report will be repeated.

The report is well worth a listen. As well as detailing Simon's diagnosis, he interviews Prof. Peter Hillmen who provides details of the CLARITY trial – which has been described as producing "remarkable" results and a "paradigm shift" in treatment. Simon's 30-minute report has helped to shine a light on CLL and has attracted a great response from many people on social media who have either been diagnosed with CLL themselves or have loved ones living with the disease.

A BBC article accompanies the broadcast which you can read at bbc.co.uk/news/stories-4292...

Since the broadcast, we have been in touch with Simon to identify his interest in meeting and explore ways in which we might be able to work together to continue to highlight the needs of people with CLL.

The CLARITY trial detailed in the report is being led by Prof. Peter Hillmen who will be speaking at our Leeds members conference on 23rd March. The conference is now full but if you'd like to join a waiting list for cancellations please either login to our website where you can add your name to the waiting list or email coordinator@cllsupport.org.uk with your name and the name of anyone who will be attending with you and details of any special dietary requirements.

If you are unable to get a place at the conference we will be filming the presentations and hope to be able to post them on our website soon after the conference.

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I was rather puzzled by this programme - well the article summary anyway.

bbc.com/news/stories-42920045

"Clarity is a trial of 50 CLL patients from across the UK who have had chemotherapy but whose disease has returned. Sponsored by the charity Bloodwise, it is the first CLL trial in the world to combine two non-chemotherapy drugs - Venetoclax and Ibrutinib. They target two separate elements of the disease - the proliferation of cells and the inability of cells to die off when they are no longer needed. This form of targeted treatment is seen as the way forward for treating all cancers.

"

I thought the FLAIR trial already combined non-chemo drugs, Ibrutinib and Rituximab...?

Obviously it is great that the Ibrutinib and Venetoclax combo is working so well, but it would good to clarify the status of the trial? Looking forward to more information.

Thanks....

Reply

Hi romarin

FLAIR now also has a venetoclax plus Ibrutinib arm, due to TAP (the trials acceleration program) allowing adaptive trial design and accelerated introduction of promising therapies into trial, this is also a Bloodwise designed and sponsored scheme. bloodwise.org.uk/research/c... here is another article that explains progress with CLARITY and the Venetoclax + Ibrutinib combination onclive.com/conference-cove...

'The phase III FLAIR trial is currently enrolling patients to further explore the combination of ibrutinib and venetoclax in the frontline setting. The combination is being compared with ibrutinib alone or FCR.

The new FLAIR line up has four arms to accommodate this, and now includes Ibrutinib plus venetoclax and single agent ibrutinib against FCR, the ibrutinib plus rituximab arm still continues, but may complete it's randomisation phase soon i believe.

Perhaps the BBC article wording was a little loose? You are right, here are many trials world wide of non chemo combination therapies in CLL and at least one is available now through routine NHS commissioning, However trials involving venetoclax plus ibrutinib are pioneering and inovative. it is early yet though for this combination, it will take time before this combination therapy is supported by robust clinical trial data over time to enable entry into the licensing and appraisal system for routine commissioning

But what exciting and interesting times for us with CLL!

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Thanks for this...

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