Living with CLL

Updated 10 Aug 2017

There’s a lot of support you – and those close to you – might need if you’ve been diagnosed with chronic lymphocytic leukaemia (CLL). As well as medical information about your condition, other information will be important – such as how to tell people, how to look after yourself emotionally and physically and practical advice about things like finances.

> You'll find information below and in our Living with and beyond blood cancer section

Looking after yourself emotionally

Being told that you have cancer can be very upsetting and will almost certainly bring many different emotions.

Friends and family may be able to offer support, but it may be harder for them to understand the long term emotional impact that you might experience. Most people with CLL have a good general quality of life, but if you’re on ‘watch and wait’ you might feel anxious.

If you do, then your healthcare team can offer support and reassurance – or you might like to try talking to other people who have, or have had, CLL.

Your healthcare team should consider your emotional, as well as physical, needs – this is called a holistic needs assessment. You’ll have one a few times throughout the course of your treatment and beyond, as your emotional needs might change.

Looking after yourself physically

Changes in your condition

You might need to live with symptoms for a long time – your healthcare team will be able to give you advice on how to cope with them.

When you’ve finished your treatment it’s important to contact your healthcare team at the hospital straight away if you notice any new symptoms, don’t wait for your next check-up. Symptoms to watch out for include:

  • swollen glands
  • bleeding/bruising
  • infections
  • a temperature
  • increasing fatigue
  • night sweats.

Keeping active

You might feel tired a lot (fatigue). This might be caused by your condition and isn’t the same as normal tiredness which improves with rest and sleep.

While even the idea of doing something can be tiring if you’ve got fatigue, try to keep as active as you can because evidence shows that this could help to make your symptoms less severe.

Although staying active may help, there’s no evidence of any particular exercise programme improving your condition or how you respond to treatment.

Diet

Similarly, there’s no evidence that any special diet will improve your condition or how you respond to treatment. However, you’re likely to feel fitter and healthier if you follow general advice on good diet from your hospital or GP.

Because your immune system may not be working as normal, you’ll need to take extra care to avoid infections that you might get from food. Your body won’t be able to destroy germs and resist infection as easily, so be careful about food ‘use by’ dates and things like keeping cooked and raw meat separate in the fridge.

You may hear healthcare professionals talk about a neutropenic diet. This means a diet for people with a weakened immune system. Your healthcare team will talk to you about this.

> Download or order our Eating well with neutropenia booklet for more advice on avoiding infections from food.

Vaccination

It’s a good idea to have the flu vaccine each year. Your GP might contact you about this, but if they don’t then you can request the vaccine yourself. It might not work as well for people with leukaemia but will still offer some protection.

If you have leukaemia, avoid having any live vaccines during your active treatment. Fortunately only a few vaccines used in the UK are live. The most commonly used ones are MMR (mumps, measles and rubella) and shingles. The yellow fever vaccine, occasionally needed for travel to certain areas, is also a live vaccine.

Shingles

Shingles is the infection of a nerve and the skin around it. It can affect you if you’ve had chickenpox, even if you had it a long time ago, as it’s caused by the same virus, which can lie dormant in your body for years. You’re more likely to get shingles if your immune system isn’t working well. The drug acyclovir is usually given to all patients during leukaemia treatment to prevent this from happening.

Shingles has some quite obvious symptoms. If you think you have it, let your GP or specialist know as quickly as possible (within 24 hours of the rash appearing is best). If it’s treated early the symptoms won’t be as bad.

Symptoms include:

  • a rash, normally on one side of your body
  • an itching, tingling or burning feeling
  • pain where the rash is
  • blisters filled with fluid which burst and form sores which then crust over 

You can’t catch shingles from someone who has it, but you can catch chickenpox from someone with an open shingles sore, if you haven’t had chickenpox already.

Where to get help and support

Many people affected by blood cancer find it useful to call on the expert information, advice and support offered by a variety of organisations, including ourselves. Here are some we recommend.

Bloodwise

We offer patient information online and in free printed booklets.

We can help with practical and emotional support and signpost you to other available services.

Macmillan Cancer Support

Offers practical, medical, financial and emotional support.

CancerHelp UK (Cancer Research UK’s patient support service)

Offer information about different conditions, current research and practical support.

CLL Support Association

Provides information and support for patients with CLL (and related conditions) and their family and friends. They also send regular newsletters and hold patient meetings for their members. You can connect with other patients on CLLSA’s online community.

Lymphoma Association

Provides emotional support and information to anyone with lymphatic cancer and their families, carers and friends.

Leukaemia Care

Offers patient information, a 24 hour care line and support groups for people affected by leukaemia, lymphoma, myeloma, myelodysplastic syndromes, myeloproliferative neoplasms and aplastic anaemia.

Travel insurance

 

Macmillan Cancer Support

Provides information about what to consider when looking for travel insurance, along with recommendations from the Macmillan online community.

Association of British Insurers (ABI)

Provides information about getting travel insurance and contact details for specialist travel companies.

British Insurance Broker’s Association (BIBA)

Offers advice on finding an appropriate BIBA-registered insurance broker.

Financial advice

 

Citizens Advice Bureau (CAB)

Offers advice on benefits and help with filling out benefits forms.

Department for Work & Pensions (DWP)

Responsible for social security benefits. Provides information and advice about financial support, rights and employment.

PIF memberStandard member