ALK positive lung cancer

Anaplastic lymphoma kinase, commonly known as ALK positive lung cancer, is a type of non-small cell lung cancer (NSCLC).  

In this page, we’ll cover:

• What is ALK positive lung cancer?
• How ALK positive lung cancer is diagnosed
• Treatments for ALK+ lung cancer
• Side effects
• Is ALK+ lung cancer curable?
• Support for people with ALK+ lung cancer.

What is ALK positive lung cancer?

ALK+ lung cancer affects around 2-5% of people with lung cancer, so it is quite rare. ALK positive lung cancer tends to be:

• More common in women than men 
• Common in women under 50 years old 
• Associated with never smokers or light smokers 
• Not known to be linked to environmental causes of cancer such as second-hand smoke, asbestos or air pollution.

ALK is a gene that tells the cells in your body how to make some proteins that sit on the surface of the cells. Cells use proteins like these to send messages to each other. ALK related proteins are common on the surface of the cells of the lungs.

When this gene is broken, or mutated, the messages get changed. In the ALK gene, the mutation, sometimes called a rearrangement, causes the cells to multiply and survive without control – causing cancer. Lung cancer with this mutation is known as ALK-positive (or ALK+) lung cancer.

How is ALK positive lung cancer diagnosed?

When you are diagnosed with lung cancer, you will undergo a series of tests. This is to help doctors understand what type of lung cancer you had, what stage your lung cancer is and what are the best ways to treat it.

One of these tests should be a genomic test. A genomic test checks cancer cells for important genetic changes (variants). Testing lung cancer in this way is a vital early step in making sure you on the best treatment plan.

Your clinical team will collect some tissue from your tumour in a procedure called a biopsy. If a tissue biopsy cannot be performed, your clinical team may take a blood sample.

Your biopsy will be sent to a laboratory for analysis and a report will be sent to your clinical team. This can take days to weeks, but you may want to ask your clinical team when to expect the results. The National Lung Cancer Optimum pathway recommends test results should be available within 10 days for newly diagnosed.

Your clinical team will explain the results of the test and discuss implications for your treatment, if any, including whether a targeted therapy may be an option available to you.

Every patient should have their sample tested to ensure opportunity for treatments are not missed. If you have not had this test, it is important to speak to your lung cancer team.

Treatments for ALK+ lung cancer

Like all lung cancers, if it is caught early enough and before it has spread to other parts of the body, surgery is usually the preferred treatment option.

If ALK+ lung cancer is caught at a later stage, it is typically treated with a targeted therapy. Targeted cancer drugs come in tablet form which you can take at home each day. You do not need to go to hospital to receive this treatment.

There are currently five drugs approved for treating ALK positive lung cancer:

• Alectinib (brand name Alecensa®)
• Brigatinib (brand name Alunbrig®)
• Ceritinib (brand name Zykadia®)
• Crizotinib (brand name Xalkori®) 
• Lorlatinib (brand name Lorviqua®).

Your lung cancer team will decide which targeted therapy is best suited to treat your lung cancer. This will depend on several factors including if you have received any previous treatment. 

For example, Brigatinib and Ceritinib may be second line after Crizotinib, followed by Lorlatinib as a third line treatment. 

Potential side effects

Most people experience some side effects when taking a targeted therapy. However, many people consider the side effects of targeted therapies to be milder and more manageable than traditional treatments, such as chemotherapy.

People tend to suffer more with side effects at the start of treatment. Over time, your body may adapt to the treatment, and this can help reduce the side effects.

Common side effects can include:

• Diarrhoea
• Nail infections (paronychia)
• Feeling nauseous or being sick
• Rash or other skin problems.

Some people also suffer with more severe side effects. If you experience any of the following, you need to contact your lung cancer team:

• Breathing difficulties, shortness of breath or worsening breathing problems 
• A cough 
• A high temperature (37.5C or higher) 
• Chest pain 
• Slow pulse (50 beats per minute or less), feeling tired, dizzy or faint, or losing consciousness
• Abdominal (belly) pain
• Back pain
• Itching 
• Yellowing of the skin and eyes 
• Changes in mental processes such as confusion, memory loss, and reduced ability to concentrate 
• Changes in mood including irritability and mood swings 
• Changes in speech including difficulty speaking, such as slurred or slow speech.

Is ALK+ lung cancer curable?

When lung cancer is caught early, it is possible to treat with curative-intent. 

Sadly, the majority of people diagnosed with ALK+ lung cancer are caught at late stage disease, when the cancer has already spread to other parts of their body.

However, even though stage 4 ALK+ lung cancer isn’t curable, it is treatable and new treatments, like targeted therapies, are helping people to live well for far longer even with late-stage disease.