Daily life, support and chronic myeloid leukaemia (CML)

Coping with chronic myeloid leukaemia (CML) can be difficult. Help and support are available, including things you can do, people that can help and ways to cope.

It can be a huge shock learning that you have a type of cancer. You are likely to feel very uncertain and anxious about the future knowing you have cancer. You may find it impossible to think about anything other than having cancer.

When you are first diagnosed, your specialist doctor will need to wait for test results before they can tell you more about your long term outlook (prognosis). Waiting to find out about your prognosis can be a difficult time. 

Many people with CML are diagnosed in the chronic phase. Their disease is low risk and treatable. So your doctor might tell you that you can expect to have the same length of life as people without CML. But some people are diagnosed in the accelerated or blast phase. Unfortunately it can be harder to control this stage of CML. Your doctor will talk to you about your treatment options and your prognosis.

Having a good prognosis doesn’t mean life with CML is easy. Chronic cancers like CML, will always be part of your life. It is different to some other types of cancer that go away when treatment ends. Although some people can eventually stop treatment, for many people there isn’t an end to the treatment or tests. So you can’t plan for a life after cancer. It can be difficult to adjust to this.

Most people will need to learn to live with taking daily medicines and the side effects. You will need regular blood tests and hospital visits. Many people face uncertainty and worry about how well treatment is working and what will happen next.

With time and support, many people manage to adjust to life with CML. This page provides some information about things you can do to help you cope and adjust to your diagnosis.

Your feelings

You might have many different feelings when you find out you have CML.

You may feel a range of powerful emotions at first such as feeling shocked, upset and find it difficult to take in anything else that is being said to you. Other emotions include feeling:

• numb
• frightened and uncertain
• confused
• angry and resentful
• guilty
• sad

You may have some or all of these feelings. Or you might feel totally different. You may feel them a few at a time or altogether, leaving you feeling exhausted.

You may feel like you have lost control over your life. People often feel a sense of loss for their old life and long to go back to it.

You are likely to feel anxious as you wait to find out about your diagnosis and treatment plan. This anxiety can continue during treatment. Many people worry about whether the treatment will work. And you might worry more than you did about your general health, and any new symptoms you have.

Chronic leukaemia is different to many other types of cancer. You often don’t look ill. And people around you might not even know you have cancer. If you have low risk disease, your doctor might tell you that your illness is very treatable and doesn’t need to affect your day to day life. Although this can be reassuring, some people feel as though they should just carry on as normal. This can make it harder to seek support or tell people about side effects, feelings or concerns.

If your CML is harder to treat, you might need to try different tablets or change doses. This can feel unsettling. Your team will understand this and signpost you to extra support.

Tips for coping with your feelings:

• Remember that it's natural to experience different feelings when you are coming to terms with your diagnosis. And these feelings are likely to come and go.
• Try to talk to your friends and family about what is happening and how you feel. This can also help them support you.
• Get in touch with your doctor or specialist nurse if you are worried about any symptoms. They might be able to reassure you. Or they can find out the cause of the symptoms and help treat them.
• You might find it easier to talk to someone outside your own friends and family. You could speak to a cancer nurse on a helpline, or to other people with CML. You can find some useful organisations from the link at the bottom of this page.

Challenges for people with CML

Most people with CML have to take lifelong daily medication and have regular blood tests and doctor appointments. This means you:

• have frequent trips to the hospital for the rest of your life
• often have to wait for test results which can be worrying
• might have side effects from treatment
• have to adapt your work and family life
• might face uncertainty about your future, making it hard to make plans

Becoming a parent

Tyrosine kinase inhibitors (TKIs) are the main treatment for CML. Doctors are not aware of any risks to a pregnancy if the father is taking TKIs. So men with CML can usually have children whilst they are on treatment. But doctors have less information about some of the newer TKIs and pregnancy. So it is always important to discuss any pregnancy planning with your doctor.

It is more complicated for women. Doctors know that TKIs can affect pregnancy and the baby's health. So you shouldn't get pregnant whilst you are taking TKIs. If you become pregnant whilst taking a TKI you should tell your healthcare team immediately.

Your doctor will talk to you about your plans for having children. For women who want to get pregnant, it might be possible to plan a break in treatment. This may only be possible if your CML has been at a low level for a long period of time. You need to discuss this with your medical team. 

You usually wait until there are no signs of CML in your tests. You then stop the TKIs before you get pregnant and stay off them throughout the pregnancy. The doctor will closely monitor your CML. You restart treatment after the baby is born.

Getting support from your healthcare team

Some people feel they shouldn’t bother the doctors about side effects or worries. Instead, they feel they should just get on with it and manage any problems on their own.

It is important you do tell your healthcare team about any concerns or problems you have between appointments.

Tips for getting support from your team:

• Talk to your doctor about who the best person to contact is. For example, the specialist doctor or a clinical nurse specialist (CNS).
• Find out about the best way to get in touch. For example, can you arrange short notice appointments through the secretary or CNS, or arrange a phone call. Or there might be an email address you can use.
• Ask questions and share any concerns. Try not to worry about ‘bothering or disturbing or wasting time’. You won't be.
• Tell your doctor or nurse what you need or find useful. For example, you might need extra support when you are waiting for test results.

Taking daily medicines

You will probably take a type of targeted cancer drug called a TKI. You take this every day. Your doctor will tell you about the treatment, how to take it, and the side effects. 

Taking a daily tablet or capsule sounds easier than other intensive cancer treatments we often hear about. But it can be a struggle. The side effects might be mild. But they can be a big burden if you have to live with them every day for the rest of your life. You might find you miss doses or feel like you want to stop taking them. For example, if you forget to take them or choose to skip a dose to avoid side effects.

Missing or stopping your tablets or capsules can affect how well they work. It is hard for doctors to work out how many doses you can ‘safely’ miss before it stops the treatment working. But research does show that people who regularly miss or stop their TKIs have a higher risk of their CML getting worse.  

Talk to your doctor or nurse if you are missing doses or are struggling to take the tablets or capsules. It is important that they know in case this affects how well your treatment is working. Remember that your doctor will have had similar conversations with other people with CML. This is not an uncommon situation for people taking lifelong TKIs.  

It might also help to talk to other people with CML. You can do this online on patient forums. Or there might be local support groups.

Tips for taking daily medicines:

• Find out about side effects, what to expect and when to get in touch with your healthcare team. You don’t have to just put up with unpleasant side effects.
• Ask your doctor, nurse or pharmacist about medicines to help with side effects. For example, anti sickness or anti diarrhoea drugs.
• Find a routine for taking your medicines. For example, your doctor or nurse can help you work out the best time to take your medicines around meal times and stick to this every day.
• Have ways to help you remember to take medicines. For example alarms, pillboxes, apps and daily routines.
• Talk to your doctor about the possibility of reducing the dose or switching to a different TKI if you are struggling with side effects.
• It might help to make changes in your diet to manage symptoms like diarrhoea or sickness. Other people with CML might be able to share some tips about what worked for them.
• Keep a diary or use an app such as ‘My CML' to track symptoms and side effects.
• Find ways of organising yourself so you don’t run out of tablets. For example, set a reminder for when your supply is due to get low.

Remember - it is important you talk to your doctor and do not stop your tablets or adjust the dose yourself.

Side effects of TKIs

Side effects are unwanted things that happen to you as a result of medical treatment. Everyone is different and the side effects vary from person to person. Side effects depend on what treatment you have. There are several types of drug treatments for CML. These have different side effects.

The side effects are often mild but these can be troublesome to live with every day. Side effects are generally worse within the first few months of taking the treatment, and then slowly improve. If there isn't an improvement, please discuss your side effects with your healthcare team.

There are some more common side effects that can have a big impact on your quality of life . These include:

• changes to your tummy or bowel, such as feeling sick or changes in bowel habit such as diarrhoea
• feeling tired
• muscle aches and joint pains

Changes to your tummy or bowel

You might feel sick (nausea). Some people find it can help to take the tablet or capsule on a full stomach, or at the same time every day. But this depends on what type of TKI you are taking. Check the instructions as you need to take some TKIs on an empty stomach. Your doctor might also give you an anti sickness drug to take.

You might have a change in your bowels, such as diarrhoea. It can sometimes help to make some changes to your diet. Your doctor might suggest you take a drug to help stop any diarrhoea.

Muscle cramps

Muscle cramps can be a problem for people on TKIs. The cramps can be painful and disrupt your life. They can disturb your sleep or limit what physical activity you can do.

Talk to your doctor if you are getting cramps. They can take a blood test to check your salt levels. They might also be able to recommend some painkillers.

Tiredness (fatigue)

Many people with CML feel tired. It can feel different to the tiredness you have felt when you’ve been busy or had illnesses in the past. It is hard to describe.

It is difficult to say how long tiredness will last or how you will feel with it. For some people it can last a long time. But for others, it can improve when the treatment is working and blood counts are back to a normal level.

To find out more about the side effects of your TKI drug you can look it up on our A-Z list of cancer drugs:

Adjusting to life on TKIs

Some people find it helps to learn more about their CML.  Information can help you:

• understand and manage your illness and side effects
• feel more in control again as you know more about what to expect
• feel reassured
• cope and make decisions

It can be difficult to absorb lots of information, especially when you are first diagnosed. Remember you don’t have to ask everything at once. There will be plenty of opportunities to ask questions and go over things you haven’t understood. It can help to have a list of questions and have someone with you at appointments. Make sure you ask for help to understand anything that isn’t clear.

Coping practically 

You and your family might need to cope with practical things including:

• money matters
• financial support, such as benefits, sick pay and grants
• work issues
• childcare

Talk to your doctor or specialist nurse to find out who can help. You might also be able to get grants for heating costs, holidays and other household expenses related to your illness.

Getting help early with these things can mean that they don’t become a big issue later. It may be helpful to see a social worker. Many hospitals have a social worker available for people with cancer.

Our coping practically section has more information about all these issues. 

You are likely to feel better as time passes and you start to adapt to your diagnosis. You might feel reassured and more positive as you see the treatment work over time. Most people can expect to have the same length of life as people without CML. Many people with CML focus on this, and it can help them cope with the diagnosis. 

Support at home for you and your family

You might need some care and support at home due to your chronic myeloid leukaemia, or its treatment. A lot of practical and emotional support is available to you. 

GP and nursing support

Your GP manages your healthcare when you are at home. They can help with any medical problems that come up. They can also make referrals to a community service for you. The availability of the different community services may vary depending on where you live.

Social workers

Social workers can help to support you with your situation at home. They can arrange:

• home helps to help with shopping or housework
• home care assistants for washing and dressing
• meals on wheels
• respite care

Your social worker can also help with money matters by checking you get all the benefits you are entitled to. Or they can advise you about charity grants for things like extra heating costs or special diets.

Contact a social worker yourself by getting in touch with your local social services office. Or ask your hospital nurse or your GP to refer you.

Local support services

There is usually other help available but services can vary from place to place.

Sometimes local voluntary groups offer sitting services. Someone comes to stay with you while your relative goes out.

Good neighbour schemes offer befriending or practical help with shopping or transport.

Local cancer support groups often offer practical help. And they are a good source of information about services in your area. Ask your doctor or nurse about local groups.

Community or district nurse

These nurses work in different places in your local area and may visit you in your home. They can:

• give medicines or injections

• check temperature, blood pressure and breathing

• clean and dress wounds

• monitor or set up drips

• give emotional support

• teach basic caring skills to family members where needed

• get special equipment such as hospital beds, special mattresses, commodes or bed pans

Community services vary from area to area. Your hospital specialist nurse can tell you what is locally available to you.

Community specialist palliative care nurse

Community specialist palliative care nurses include Macmillan nurses and hospice nurses. They specialise in advice about pain control, sickness and other symptoms of leukaemia. They also give emotional support to you and your carers.

Marie Curie nurses

Marie Curie nurses give nursing care to people with advanced cancer in their own homes. They can visit during the day or spend the night in your home to give your carers a break.

Cancer Research UK nurses