LETTER FOR YOUR MEMBER OF PARLIAMENT RE: Proposed delisting of Bendamustine and Ibrutinib from The Cancer Drugs Fund list.

The CLLSA member's letters to MPs campaign to prevent delisting of CLL treatments from the CDF has now ceased following the Novenemer 4th outcomes The letter template is now out of date and  longer availble, new letters to MP's are not now required.

Scientifically inquisitive CLL person needs information

Ok, so I have the booklet "CLL Patient Information" given to me by my haematologist when I was first diagnosed about 6 months ago, but I am struggling to find the next exciting installment.

I need to know what the main lines of treatment are and where the stumbling blocks are in finding an actual cure. Of course I can look up what a kinase inhibitor is but it would be nice to find all the relevant information in one place.

NICE approves idelalisib (Zydelig®) for the treatment of chronic lymphocytic leukaemia in England and Wales

 NICE says yes to new class of drug for adults with leukaemia

Today, the National Institute for Health and Care Excellence (NICE) has announced that idelalisib, in combination with rituximab, will be made available on the NHS in England and Wales for patients with chronic lymphocytic leukaemia (CLL). 

Travel Insurance


My husband has CLL and we are thinking of going away for about 6 months before its not advisable. We have started  the planning (  South America looks  attractive) and would welcome any info on other people experience of travel insurance with the condition. And, actually, any advice on travelling with the condition- it would be good to hear what others think /have done.. Thanks



Update on the current Cancer Drugs Fund list - Two drugs for treating CLL planned to be withdrawn

On Friday 4th of September 2015 the England National Cancer Drug Fund announced results of the prioritisation review of drug listings. It is very disappointing to learn that two drugs for treating CLL patients are planned to be withdrawn by the 1st of November: bendamustine for treating relapsed CLL patients and ibrutinib for treating relapsed/refractory patients.

We are preparing to take action against this decision and are coordinating with leading clinicians and the wider CLL community to make a formal appeal to CDF  

CLL Newsletter Summer 2015


As your new Chair I am very pleased to give you this short introduction to what has been going on in recent months plus a look ahead to some of our plans. Now is a good time to announce that we are in our 10th year as the CLLSA and the article by Sue Waldie gives you a fascinating insight to how the Association came about. We are very lucky to still have Chonette on the board of trustees and her experience is invaluable to all of us.

The following is a review of the NCRi CLL Trials open for recruitment in the UK as of July 2015. The trials are grouped in relation to patient condition:


Patient Condition

Currently Open Trials

Future Planned Trials

Patients considered fit for FCR

(previously untreated)

FLAIR (CLL10)  Phase III trial

(Ibrutinib + Rituximab vs FCR)


LLR TAP CALiBRe (Idelalisib Monotherapy) 


FLAIR Amendment

(still in discussion regarding adding another chemotherapy-free arm)


Success for Sunday's CLLSA London 10K runners

On Sunday CLLSA runners took to the streets of London in the 2015 Vitality British 10k London Run.  The fine summer weather held, feedback received so far; is that it was a great success and day out for our brave runners, their families and friends. Many achieved record times with CLLSA trustee Dr Samir Agrawal finishing in 50 minutes with CLLSA coordinator Sarah’s team and Jen and Tim’s team all finishing in 65 minutes. The information is still coming from all teams so the picture and information is not yet complete.