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This very dull disease……………………………………………..

This most common of the adult leukaemias has been overlooked for too long. Always chronic, usually elderly and usually slow so who cares? Well we do!

This disease is of course not always dull and particularly so when it becomes aggressive or transforms into something deadly. You will remember my email a few days ago about the sudden recent death of CLL member Mike Bush.

Sarah, Mike’s wife, has agreed that I let our members know that donations to the Leukaemia Research ‘Mike Bush Forget Me not Fund’ now total over £3000.

This money will be used to fund the following research programme:

Title: ATM pathways in CLL: The development of targeted treatment: Summary of research:

B cell chronic lymphocytic leukaemia (B-CLL) is the most common cancer of blood cells in western countries. Control of these leukaemias normally involves drug treatments that rely on two genes being normal, ATM and TP53, as their proteins work together with the drugs to cause the leukaemic cells to die. Approximately a quarter of B-CLL patients, however, have a particularly aggressive form of the leukaemia. This is because these leukaemias have defects in ATM or TP53 and, therefore, cannot work with the drug treatment to kill the leukaemia cells. We will attempt to overcome the disadvantages for treatment that these mutations in ATM and TP53 cause by inhibiting the survival signals that accompany mutation of these genes.

Further donations to this fund can be made to Sarah Bush and sent to the CLL Support Association and we will pass them on or direct to the Leukaemia Research Fund quoting the ‘Mike Bush Forget me Not Fund’.

13.10.06

 

CLLSA makes submissions to NICE

The CLL Support Association has been involved in two separate submissions to the National Institute of Clinical Excellence (NICE) which is reviewing the use of Fludarabine in the treatment of CLL. Howard Pearce requested comments from all CLLSA members on the use of this drug and received around 20 replies. This has been consolidated into a response on behalf of the association.

Jane Barnard, a CLLSA member who is also a microbiologist, volunteered to also be a ‘patient expert’ and has submitted a separate submission. You can read the full submissions on the website. The bottom line is that we both support the provision of Fludarabine on the NHS, but with safeguards as this is a very powerful drug.

Both Jane and myself attended the NICE review meeting in London on September 19th.

Howard Pearce, 5th September 2006

NICE Submissions and Meeting Notes

NICE Submission1

NICE Submission2

NICE meeting - 19th September 2006

   
         

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