“Welcome to the Family” A Practical Guide for Newly Diagnosed CLL Patients and those close to them.

[HAIRBEAR_UK]

“Welcome to the Family”

A Practical Guide for Newly Diagnosed CLL Patients and those close to them

Written for CLLSA by Professor Chris Fegan MB, MD, FRCP, FRCPath

Consultant Haematologist School of Medicine, Cardiff University - November 2014

We all know that rarely do good things last forever but one’s health is something we often take for granted until of course that is taken away. You’re reading this because either you or someone close to you has been diagnosed as having chronic lymphocytic leukaemia. It’s a devastating moment- leukaemia – cancer of the blood – a real smack between the eyes. Yes its cancer and with that diagnosis often comes memories of family or friends lost, stories you’ve heard of others and their treatments or disturbing images from the television. CLL is the commonest leukaemia but many of you will never have heard of it until now. The important word however in CLL is not “Leukaemia” but “Chronic”. Hence the stories and images on TV are almost never those of CLL patients as most patients are well and having a full and active life, although there are an unfortunate few who for many reasons things do not turn out as one would hope.

As in any family, you did not choose to become a blood member. Fate forced it upon you. But the CLL Family is made up of tens of thousands of CLL focussed laboratory researchers, nurses, doctors, therapists, dieticians and most importantly the over ½ million CLL patients around the world - and those close to them - all with the one goal of supporting patients to live fully with their illness, learn more about CLL and ultimately identify even better treatments to enable patients to have a normal, full and active life.

If you take nothing else away from reading below just remember that CLL is an illness you can usually live well with – very often without requiring any specific treatment.

The aim of this Guide is to inform you where we are with regards to background research and knowledge and to provide you with tips of how to cope with the news that you – or someone close - has CLL and to stop it affecting your life more than absolutely necessary, if at all.

To read full Practical Guide click this link cllsupport.org.uk/welcome-f...

CLLSA website cllsupport.org.uk to access UK CLL information topics,

Start here for recently diagnosed: cllsupport.org.uk/cll-sll/s...

Information Recommended for Newcomers cllsupport.org.uk/cll-sll/s...

CLLSA Videos from the Cambridge CLLSA members meeting June 2014

Part One - An Overview of Chronic Lymphocytic Leukaemia Dr George Follows cllsupport.org.uk/cll-overview

Part Two - The Role Of The Nurse Specialist - Gwyn Stafford cllsupport.org.uk/cll-sll/r...

Information booklets:

2014 CLL by Bloodwise formerly LLR bloodwise.org.uk/sites/defa...

Watch and Wait: Monitoring While Treatment Is Not Necessary bloodwise.org.uk/sites/defa...

CLLSA video series: patients and carers sharing their own story youtube.com/watch?v=BTZp1gH...(Not working as expected?)

A 2012 talk but still very relevent today - CLL overview presentation audio and slides from 2012 LLR CLL open day at Cardiff - Prof Chris Fegan

youtube.com/watch?v=i8JegCa...(Not working as expected?)

CLLSA meeting talks on treatment advances

CLLSA December 2014 meeting talk - In this webcast video with slides Dr Claire Dearden provides an introductory overview of CLL followed with an update on CLL therapy following her return from the 2014 American Society of Haematology conference. cllsupport.org.uk/cll-sll/t...

[Ernest2]

Many thanks Nick, that's a really good introductory guide from Prof Chris Fegan. Found it helpful to remind me of lots of things (The grey matter does need refreshment).

Was also interested to read the paragraph on mutation,

Only thing I didn't get was the third kind of treatment mentioned:

"Finally there is in development another new kind of treatment which encourages the CLL cells to undergo apoptosis"

An example for that, if possible to give at the moment, would be interesting.

Also noted transplants not mentioned, presumably on grounds of keeping it simple - probably a good decision.

And many thanks to all for all the hard work bringing us all this material.

Best Regards,

Ernest.

[Graham2222 in reply to Ernest2]

Hi Ernie. I presume the new treatment referred to is ABT-199/GDC-0199. Early days on that one.

Regards

Graham

[Graham2222]

A helpful and concise summary, thank you. I had forgotten the Vitamin D association (there's another post nearby on that subject).