Prof Chris Fegan, from the Cardiff CLL research group, speaks at the Cardiff LLR sponsored open day in 2012. Watch and listen to the above presentation as he discusses and explains some of the problems that may be experience by people with CLL and the spectrum of challenges that are not often easy to quantify.
How heterogeneous, different and varied it is in us all.
How quality of life issues are real and may or may not affect individuals in many ways. Hardest to quantify but itbis clear:
That fatigue and emotional impacts are high in CLL patients especilly those on watch and wait.
That infections are an issue for patients before during and after treatment.
How do you know if you have CLL? by Prof. Terry Hamblin
Prof Hamblin explains why syptoms may be experienced by those with CLL and concludes his article touching on the “B” syptoms
Patients may also suffer from so-called B symptoms. B symptoms come from Hodgkin's disease doctors who used them to decide whether to treat with chemotherapy or radiotherapy and they have been imported into CLL theology where they don't necessarily fit precisely. There are three types of B symptom: fever, weight loss and night sweats. Some doctors and most patients think that fatigue should also be a B symptom in CLL.
Patients with CLL are more susceptible to infections than normal - they have an immunodeficiency.
Most patients with CLL are discovered because they have a blood test for some other reason. If patients have signs or symptoms, the commonest is enlarged lymph nodes, but the spleen (or more rarely the liver) may also be enlarged. In the most severe cases there may be anaemia or thrombocytopenia. Some patients have B symptoms and all have a degree of immunodeficiency
Links in this section
Always consider what you read carefully, it may not apply to you.
Although we have selected sites providing relevent, current and reliable information they can bocome out of date qickly because of rapid changes to the CLL landscape.
A good place to start:
Remember – many people with CLL have no symptoms at first. Many of the symptoms listed below occur in CLL but are more likely to be caused by other illnesses. CLL may cause
Swollen lymph glands or abdominal discomfort from an enlarged spleen
In CLL, you can have swollen glands (lymph nodes). The swollen glands are most often in your neck or under your arms. You may also get an enlarged spleen. The spleen is an organ on the left of your body, just under your ribs. If your spleen becomes much bigger than normal, it can be uncomfortable or painful. Your doctor may be able to feel that the spleen is enlarged.
CLL itself uses up energy that your body would otherwise use or store. So you may lose weight, even if you eat normally. Rarely, an enlarged spleen may also increase the weight loss by squashing your stomach and making you feel full more quickly than usual. You may then eat less than normal.
Infections that will not get better
As the numbers of abnormal white blood cells rises, you may pick up infections more easily. This is because the abnormal white blood cells cannot fight off infection as well as healthy ones.
The lack of space in the bone marrow also interferes with the production of red blood cells. These normally help to carry oxygen around the body. If you do not have enough red blood cells, this is known as anaemia. You may feel breathless and tired. Anaemia is generally a later symptom of CLL.
Bleeding or bruising
The extra white blood cells take up more space in the bone marrow as their numbers grow. So there is not enough room for platelets to be made. Platelets help to clot the blood, so you may have nosebleeds, unexplained bruising or unusually heavy periods. This is generally a later symptom of CLL, rather than an earlier one. Often bleeding and bruising happens in people who have a bleeding condition as well as CLL.
Bone pain and night sweats
Some people whose CLL has changed (transformed) into a high grade disease have bone pain and night sweats. Bone pain happens because there are too many leukaemia cells in the bone marrow, causing pressure on nerves and causing pain. The exact cause of the night sweats is unknown.
What to do if you have these symptoms
If you have any of these symptoms you must have them checked by your GP. But remember, they can all be caused by other conditions. Everyone's lymph glands swell up when they have a throat infection for example. Most people with these symptoms will not have chronic leukaemia.
This is one site that does highlight fatigue so often experienced by many with CLL who are not anaemic and not always acknowledged.
How you might be feeling
Even if you are not anaemic, you may well find that you feel tired much of the time. This is known as fatigue and it is caused by your illness. It is not the same as ordinary tiredness which improves with rest or sleep.
Fatigue is different, because when you have fatigue, even after a long rest, you still feel exhausted. You may wonder how best to deal with fatigue – whether it is better to rest more than usual or whether you should remain active. Fortunately, there is clear advice on this: it has been shown that doing nothing tends to make fatigue worse, while staying as active as you can manage tends to make it less of a problem. Being active will not make fatigue go away completely, but it will make it less severe.
Most people with CLL have a good general quality of life. If you are on ‘watch and wait’ (not being actively treated), then it is very likely that you will feel anxious. Some patients become very concerned; if this is the case for you, then your healthcare team should be able to offer support and reassurance. Not all patients who develop symptoms start on treatment at this time. You may have a long period of living with symptoms. If so, you will be offered advice on coping with symptoms. If symptoms are becoming a burden, you may want to see your consultant to discuss whether you should start treatment.
Leukaemia & Lymphoma Research has a booklet on ‘Watch and Wait’.
This section is about fatigue due to cancer or its treatment. Fatigue means feeling very tired or exhausted all or most of the time. The tiredness is not relieved by rest and can affect you physically, psychologically and emotionally.
Any one who has been diagnosed with CLL has a damaged immune system. This means that we are more likely to get infections, and less able to fight them than healthy people of the same age.
Words that your doctors may use are: immunosuppressed, leucopoenia, myelosuppression, pancytopenia, thrombocytopenia, granulocytopenia
They are all connected to having a damaged immune system.
To find out about your own immune status and health, talk about your particular health needs with your hospital (haematology or oncology) doctor and your own GP surgery.
Although we can theorise about how good your immune system is at various times in the CLL journey, think about what you actually need. If you are getting many infections, or your cuts infect easily, or you do not recover well from colds, go back and talk to your doctors to decide what you need to do to stay healthy.
Macmillan have relevant article: Avoiding infection when you have reduced immunity
If you are having treatment for CLL (chemotherapy or other drugs) or you have had a stem cell transplant then you are more at risk from infections than ‘ordinary’ CLL patients. You will have had clear instructions from your doctors how to protect yourself and when to contact them if you are ill, there are also some links included here.
Reporting Symptoms- seeing your doctors
To help your doctors to help you, keep a diary of your symptoms. Here is a page showing which symptoms are relevant to CLL. Record and take the notes of all your symptoms. CLL symptoms include night sweats, and the number of infections that you have had.
The lympomation site is about working with your doctor and how you can build on your partnership. Optimizing Doctor Visits
Take your notes to each visit to the doctors, including your GP. Very occasionally your visits to the surgery or hospital may be recorded on different ‘screens’ at the surgery or clinic, so while you may be aware that you had 4 infections in 3 months, the doctor would not be. Have a summary ready- ‘4 infections in 3 months, night sweats every week’ to quickly give the doctor the important part of the picture.
If you are having chemotherapy or a stem cell transplant, you will be given emergency help lines and told when to contact them. Keep the numbers by the phone.
Don’t wait - get help
If you have a temperature, or feel ill, then get in touch immediately with your:
GP or NHS call 111. Do it now, not Monday morning!
If you contact any medic, or have to go to accident and emergency for treatment, repeat to every new doctor or nurse that you talk to that you have CLL, and have a damaged immune system. Take along any blood results that you have from previous checkups if you have them available.
2014 CLLSA Quality of Life Study
The full report, following quantative analysis of the responses of 284 members, into quality of life issues for people living with CLL can be found here.
Summaries with results, observations and conclusions cab be found below.