FAQ: Stage IV Lung Cancer with ALK Rearrangement

Non-small-cell lung cancer (NSCLC) is the most common type of lung cancer. It’s rare, but some people have NSCLC with “ALK rearrangement.”

Understanding what that means can help you better manage your health. It will also make it easier to talk to your doctors about your care and treatment. Here's what you need to know.

What Is ALK Rearrangement?

ALK (anaplastic lymphoma kinase) is a gene that tells your body how to make proteins that help cells talk to each other. If you have lung cancer with an ALK rearrangement, part of this gene is broken and attached to another gene. Doctors call changes in genes like this mutations. This one boosts your odds of several types of cancers, including lung cancer.

You may hear your doctor call it ALK-positive.

What Does Stage IV Mean?

Staging means how far the cancer has spread to other body parts. Knowing this helps your doctor plan your treatment options.

The higher the stage number, the more the widespread your cancer is. Stage IV is the most advanced form. It means the disease has spread to distant parts of your body, such as your liver or brain. This type is very hard to cure.

More than half of the people who have lung cancer don’t find out until the disease is in later stages. So if you have symptoms, see a doctor.

What Are the Symptoms?

Lung cancer may not cause problems until you’ve had it long enough for it to spread to other parts of your body. But talk to your doctor if you have:

• A cough that doesn’t go away
• Chest pain that gets worse with deep breathing, coughing, or laughing
• Hoarseness
• Weight loss without trying and loss of appetite
• Coughing up blood
• Shortness of breath
• A weak or tired feeling
• Wheezing

When cancer spreads, as it has by the time it gets to stage IV, it can cause:

• Bone pain
• Problems related to your brain and nerves, like headaches, weakness or numbness in your arms or legs, dizziness, balance problems, or seizures
• Yellowed eyes or skin
• Lumps near the surface of your skin

How Is It Diagnosed?

If you have non-small-cell lung cancer, your doctor should test you for the ALK genetic mutation. This will help find the best treatment for you.

Most doctors use a test called FISH (fluorescence in situ hybridization). Your doctor will take a sample of the tumor during a process called a biopsy and send it to a lab. Scientists will check the tumor's DNA for signs of the gene mix-up.

This test doesn’t check your DNA makeup. That means it can’t tell if your children or other members of your family have the mutation.

Your doctor will also run tests to see how far the cancer has spread. You’ll get imaging tests to take pictures of other organs and body structures. And they might take another biopsy. If you get surgery to remove the tumor, the surgeon might find cancer that didn’t show up on other tests.

Are There Treatments?

Yes. Medicines called ALK inhibitors are the main kind. These drugs block the abnormal ALK protein and shrink lung tumors linked to it. Your doctor might call this “targeted therapy” because it zooms in on the cancer cells and disrupts their growth. You should only take these drugs if a FISH test shows you have the mutation. These drugs won't cure you, but they should improve quality of life.

ALK inhibitors include alectinib (Alecensa), brigatinib (Alunbrig), ceritinib (Zykadia), crizotinib (Xalkori), and lorlatinib (Lorbrena). These are pills that you take once or twice a day.

After a few years, the medicine may stop working. This is called resistance. If this happens, or if the cancer spreads, you may need to switch to another ALK inhibitor.

What Are the Side Effects?

Like all medicines, these drugs can cause other problems. The most common include:

• Diarrhea
• Fatigue
• Nausea
• Vomiting
• Blurry vision

These side effects are usually mild, but not always. Stomach problems tend to be more severe with ceritinib. In rare cases, some people have to stop taking the drug.

A small number of people get pneumonitis, an inflammation of the tissue in the walls of the lungs. It can be life-threatening. If you get it, your doctor will likely tell you to stop taking the drug.

Before you take these drugs, your doctor should do an EKG to test your heart. ALK inhibitors have been linked to changes in the heartbeat or heart rate that aren’t explained by other health problems or medications.

What About Chemotherapy?

Your doctor might start you on chemotherapy before you get tested for the ALK rearrangement. If you’re ALK-positive and already on chemo, some experts say you should stick with it for several cycles -- as long as you can handle it and the cancer doesn’t spread.

If the cancer does spread, your doctor may switch you to an ALK inhibitor.

What Other Treatments Might I Need?

This depends on how far your cancer has spread.

If it has reached your brain, your doctor might suggest surgery or radiation. But newer ALK inhibitors are helping to reduce this need.

Your doctor will prescribe other treatments to keep you as comfortable as possible. These often include:

• Medicines to ease your pain, shortness of breath, and other symptoms
• Procedures to remove fluid buildup from around your lungs to help you breathe better

Be sure to tell your doctor about all your symptoms so you get the right treatments.

How Often Will I See My Doctor?

This also depends on the stage of your cancer. Your health care team will let you know how often you should come in for checkups. Keep all your appointments so your doctors can keep up with how you feel and how well your treatment is working. They may order regular follow-up tests, like:

• Blood work
• Lung tests
• Imaging tests to take pictures of the inside of your body, like CT scans or chest X-rays

Can a Clinical Trial Help Me?

Scientists are looking for new ways to fight lung cancer. A clinical trial may be a good option if what you’re doing isn’t working, especially if you have stage IV cancer. Ask your doctor about any clinical trials for ALK-positive lung cancer. Clinicaltrials.gov is another good place to try. Try typing "ALK- positive lung cancer" in the search box.

Remember, you’re at the heart of your health care team. Taking a proactive approach to care and treatment can help you feel more in control. Deciding on the right treatment for cancer is a personal choice. It’s OK to ask questions if you’re not sure how a medicine or therapy might affect you, and to tell your doctor how you’re really doing -- physically and emotionally. It’s normal to have strong feelings when you’re dealing with cancer. Your doctor can put you in touch with a counselor and support group so you can talk to people who understand what you’re going through.

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