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

In the above video Andy shares with us: What led to his CLL diagnosis, how he received the news, the conflicting message, how this impacted on Andy, his challenges living with symptoms while on watch and wait, understanding the concept, how it took time to be "reasonably comfortable" living with CLL & watch and wait and how if more information was made available to him earlier on it would have helped.

 

“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 Unifversity   Sepember 2017            

Introduction

We all know that rarely do good things last forever, but our health is something we often take for granted until it is taken away. You’re reading this because either you, or someone close to you, has been diagnosed as having chronic lymphocytic leukaemia, usually known as CLL. It’s a devastating moment- leukaemia – cancer of the blood – a real smack between the eyes. Yes it’s cancer and with that diagnosis often comes memories of family or friends lost. You've heard stories of others and their treatments, or disturbing images from the television. CLL is the commonest leukaemia but many of you will never even 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 of these patients are well and having a full and active life, although there are an unfortunate few, who for many reasons things do not have the outcome 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 focused members. 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, that 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, 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.

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