In the above video Derek shares with us: how he felt when he was diagnosed with CLL and his journey since then, how he copes living with 'watch and wait' and involving family, friends and doctors, his hopes for the future and his activities that keep him busy.
Diagnosis of cancer is devastating and to be diagnosed with chronic lymphocytic leukaemia can be very confusing; especially when you may have no physical signs and CLL was discovered during routine blood tests. The uncertainty involved when you are diagnosed with what is often an "unseen" and chronic (slowly developing) condition can be very hard to come to terms with.
Understanding “Watch and Wait” involved for the majority at diagnosis may be difficult, when you know other cancers may need to be managed and treated with a need for speed. CLL is slow to develop if it is going to and requires monitoring over time to see how it is likely to behave.
To start your journey this page provides an introduction and overview explanation of CLL and its management today in understandable language.
Reliable information and support can aid you to cope with diagnosis and help prepare you to be more involved in your own health care discussions with your doctor. This website we hope helps prepare you to live well with CLL, it is not a substitute for medical care, you should always consult your medical team if you have concerns about your health.
Many also find our on-line community helpful too, where members share their own experiences and discuss issues together. Our regular members meetings are also a very effective way of meeting others with CLL and learning from each other and clinical experts.
“Welcome to the Family”
Written for CLLSA by Professor Chris Fegan MB, MD, FRCP, FRCPath
Consultant Haematologist School of Medicine Cardiff University September 2017
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.
CLL patient/carer Information booklets written in patient friendly language to help you start your Journey
Finding out about your condition
People feel differently about how much information they want and when they want it. You may not want a lot of information at the beginning; you may want it bit by bit or you may want to have as much information as possible. It is important to let your consultant and clinical nurse specialist know how much information you want.
You can always ask for more information at any time. Even if you decide at the beginning that you do not want detailed information, it is still possible to ask more questions later on. If you have questions about your condition, it is a good idea to write them down to have them handy when you see your consultant or key worker. If they are not the best person to ask, they can tell you who you should speak to. You can find some suggestions of questions you might want to ask at the end of this booklet.
If your hospital has a clinical nurse specialist, it may be possible to arrange time with them to discuss your condition. Some patients prefer this to asking the consultant. You should decide what is right for you.
Many diagnosed may be told they have smouldering CLL, in the video below produced by partners PatientPower world-renowned CLL expert from MD Anderson Cancer Center in Houston, Dr. William Wierda, defines smoldering CLL including an explanation of how it is diagnosed and monitored.