Treating ALK+ Lung Cancer

Advances in ALK Targeted Therapies

Since ALK+ lung cancer was first discovered in 2007, researchers have developed several ALK TKIs. Newer-generation TKIs tend to be safer and more effective. And researchers around the world are working to develop even better versions through clinical trials.

The following ALK TKIs are currently FDA-approved in the United States:

3rd Generation TKI:

• lorlatinib (Lobrena®)

2nd Generation TKI:

• alectinib (Alecensa®)
• brigatinib (Alunbrig®)
• ceritinib (Zykadia®)
•  ensartinib (Ensacove™)

1st Generation TKI:

• crizotinib (Xalkori®)

These medicines are pills, taken once or twice daily. You should only take them if your biomarker test shows you have the ALK gene abnormality (meaning it is “ALK positive”). They won’t cure you, but they can improve your quality of life and help you survive much longer.

Many of these ALK TKI medicines are also approved for use in countries outside the United States, although specific guidelines for prescribing them may be different.

What to Expect During ALK Inhibitor (ALK TKI) Treatment

Possible Side Effects of ALK TKIs

Most patients treated with ALK TKIs tolerate them well. Compared to traditional therapies, such as radiation and chemotherapy, TKIs tend to cause fewer and less troublesome side effects.

When an ALK TKI Medicine Stops Working

Unfortunately, most patients taking an ALK TKI eventually develop drug resistance, meaning their current TKI medicine stops working and their cancer progresses. Progression means one or more tumors have grown, spread to other parts of the body, or new tumors have developed.

Clinical trials of ALK TKIs may include a measurement called progression-free survival or PFS. This measures how long patients lived without their disease progressing during treatment. PFS may vary among different ALK TKIs. Your oncologist can help you understand what PFS in clinical trials may mean for you.

When this happens, your doctor may add or switch you to another ALK TKI medicine—so you can stay on an ALK TKI for as long as possible. If you’ve already tried other approved ALK TKI medicines or can’t tolerate them, you may be eligible for a clinical trial offering other promising therapies being studied for ALK+ lung cancer.

Drug resistance to ALK TKIs can happen for a number of reasons. Sometimes, the cancer-driving ALK protein —which the ALK TKI medicine inhibits— mutates (changes), so that your medicine can’t latch on to inhibit it as well. Sometimes, the ALK cancer cells just learn to outsmart your current medicine over time and start growing again.

Doctors usually monitor ALK+ lung cancer patients – with imaging studies and sometimes occasional liquid biopsy blood tests – to watch for signs that a current ALK TKI medicine is starting to lose its effect. So, you may have some advance notice for needing a different treatment.

Researchers are learning much more about why drug resistance happens. And many research efforts are underway to find ways to delay or prevent it.

Planning for ALK+ Lung Cancer Progression

It’s hard to know exactly when ALK+ lung cancer will progress. Other than following the directions for the medicines your doctor prescribes, experts aren’t currently aware of anything that can be done to ensure it doesn’t happen.

You can, however, take steps to plan ahead for progression, so you feel more in control and prepared to act if needed.

1. Make a treatment (progression) plan with your primary oncologist, so you’re both on the same page about what to do if your cancer does progress.
2. Have your team ready.
   • Designate someone as your primary caregiver in case you need extra help down the road.
   • Know who to call and/or which hospital you’ll want to go to if an emergency situation develops.
   • If you might want a second opinion from an expert ALK+ specialist at any point, identify that person and their contact information now.
   • If you might consider a clinical trial as a next step, explore those options now. (Our active Clinical Trials list can be helpful here.)
3. Keep learning about ALK+ lung cancer and the latest treatments, so you’ll be able to discuss them and make informed decisions with your team if a change is needed. Our ALKtALK learning events and ALK Positive newsletter are excellent ways to stay up to date.

ALK+ patients have other treatment options if ALK TKI medicines no longer work well for them. They can include surgery to remove new tumors, radiation, chemotherapy, or other treatments and combinations currently being studied in clinical trials.

Today, patients with ALK+ lung cancer are living longer than ever. And many research efforts are underway to find even better ways to help slow or stop its progression.

Monitoring During Treatment

Your schedule for doctor visits to monitor your cancer once treatments start will vary. Follow-up visits typically happen every 3 months at first (sometimes more often). Over time, they may become less frequent, depending on how you’re doing.

The types of routine tests you have will depend, in part, on your stage of cancer and treatment. These may include the following:

• Routine blood work to monitor for medicine effects and other health issues
• Liquid biopsy biomarker testing
• Chest and body CT scan (every 3 to 12 months)
• Chest and body PET scan (some doctors order as they see fit)
• Brain MRI (every 3 to 12 months) Because it’s common for ALK+ lung cancer to advance to the brain as it progresses, regular brain imaging is important to catch any cancer spread early.

Clinical Trials: Is One Right for You?

Researchers are working hard to find new and better ways to treat ALK+ lung cancer at every stage.

Being part of one of these research studies can give patients with ALK+ lung cancer access to novel therapies being developed. Sometimes, the trials focus on new ways of using already approved treatments (such as drugs being used in other cancer types or in combination with other therapies).

Enrolling in a clinical trial may be an option at any point in cancer care. Some are designed for patients with recently diagnosed ALK+ lung cancer. Many other trials are offering hope for people whose ALK+ cancer has progressed after trying currently approved TKIS or who can’t tolerate them.

Getting the Best Care for ALK+ Lung Cancer

1. Choose an experienced cancer doctor (oncologist) and hospital
   • Call 2 to 3 hospital cancer centers to schedule a visit and meet their doctors
   • Be open to traveling outside your area. Appointments are usually every 3 months
   • Ask for opinions in the online support group
2. Make the most of your doctor visits
   • Write down questions you and your loved ones want to ask.
   • Bring a loved one or other advocate to take notes. Or ask if you can record your conversation
3. Get a second opinion about your diagnosis and treatment options
   • We can connect you with doctors who have experience and expertise in ALK+ lung cancer through our Second Opinion Program
4. Educate yourself! Knowledge is power in ensuring you get the best care
   • Watch the ALK+ 101 video series, created by ALK+ cancer patients and care partners who are members of our ALK Positive, Inc. Medical Committee
   • Sign up for our ALK Positive newsletter with important news, insights, and learning events.
   • Attend our annual ALK Positive Summit, either in-person or online.

Who’s On Your Care Team?

Good medical care for ALK+ lung cancer often takes a village! Depending on your health needs and treatment plan, your team may include some or all of the following specialists:

• Oncologist is your main cancer doctor—responsible for treating, monitoring, and keeping you informed about your cancer (A thoracic oncologist specializes in lung cancers)
• Nurses, nurse practitioners, physician assistants may work with your oncologist to help coordinate and solve issues that come up during your care
• Thoracic surgeon operates on your chest if you need surgery to remove a lung tumor
• Radiation oncologist may be involved if you need radiation to treat your lung cancer
• Pulmonologist focuses on other lung issues that may arise, such as breathing trouble
• Radiologists and pathologists perform imaging and lab tests, respectively, to monitor your cancer and how well treatment is working
• Palliative care specialists aim to improve quality of life during treatment by addressing discomfort and fatigue and providing guidance and support for you and your family
• Registered dietician can counsel you on healthful eating and other food-related issues
• Mental health professional may be a doctor, therapist, or counselor who provides emotional support and tools for managing life with cancer
• Pharmacist fills prescriptions and can explain possible side effects and financial help programs that may be available to you