ALK-Positive Lung Cancer TKIs: A Patient-Friendly Guide

TKI treatment options in Canada

In Canada, alectinib and lorlatinib are commonly used. 

To make a decision on which TKI to use, your oncology team will consider:

1. Cancer stage and whether cancer is in one area or has spread to other areas (i.e. brain)
2. Side‑effect profile and your health history
3. Provincial drug funding and access programs

A newer option, neladalkib (NVL‑655), is in clinical trials. Drug availability and funding can vary by province, so it’s a good idea to ask about clinical trials as well as standard treatment options.

Baseline tests and monitoring

Your team may order baseline scans and lab tests before starting a TKI therapy, and then recheck them at regular intervals. The routine tests and monitoring you undergo will vary depending on your diagnosis stage, the side effects you experience, and the treatment you start. 

The following is a general list of tests that could be performed, but your plan will be personalized. You can use this list to ask your oncologist whether these tests are needed for you and how often they should be done:

• Imaging: CT and/or MRIs are standard scans to have during TKI therapy. 
• Bloodwork: your oncologist will decide which tests are appropriate based on the specific TKI that you are taking and your individual health needs. 
• Heart checks, if applicable: with lorlatinib, routine ECGs and blood pressure monitoring are often recommended; your care team will advise you on what’s needed based on your individual situation. Consider a cardiology consult before starting lorlatinib, with ongoing cardiac monitoring. For higher risk patients such as those with previous heart concerns, routine cardiovascular monitoring is suggested, including: baseline and periodic blood pressure, lipids, glycemia, assessment for edema/weight change, and prompt evaluation of symptoms suggestive of ischemia or heart failure. 

Typical follow‑up schedule

When starting a TKI, your team will schedule regular check‑ins to track side effects and see how the treatment is working. Timing can differ by province and clinic, so the schedule below is a general guide. Early on, imaging and follow-up visits tend to occur more frequently. As treatment continues, the interval between scans and appointments often increases, particularly when multiple scans show continued improvement or stable disease. 

• Weeks 2–4: phone or in-person appointment to review side effects, symptoms and how you are managing the daily routine. 
• Weeks 2–6: complete lab work and review if a dose adjustment is needed to manage side effects.
• Weeks 4–6: complete scans such as CT and/or MRI to assess treatment response. Lab work may also be done. A check-in with your oncologist will occur to review side effects or any new symptoms.

Side effects and daily life on TKIs

Most side effects are manageable with early reporting and simple adjustments. Here are some practical tips to monitor and manage side effects. You can also check out our resources on side effect management with lorlatinib.

• Keep a symptom diary and report changes early (examples include energy, mood, sleep, bowel movements, headaches, skin changes, weight, etc.).
• Some TKIs, like alectinib and brigatinib, can increase photosensitivity, making you more susceptible to sunburns.
• Common side effects vary by drug and person. These are often manageable with dose adjustments.
• Take medications exactly as prescribed.
• Ask about drug interactions (including food and supplements).
• Supportive/palliative care teams can step in and help manage symptoms from the start. They can help from day one with symptoms, sleep, mood, energy and more. Ask to talk to a palliative care team to receive additional support. 

Missed or doubled doses

Here is what to do for each scenario:

• If you miss a dose:
  
  • Take it as soon as you remember. However, if it is close to the time of your next dose (within 4 hours), just take your next dose at your regular time. Do not double the dose. 
• If you vomit after taking a dose:
  
  • Do not take an extra dose. Take your next dose at your regular time.
• If you double the dose:
  
  • It is often okay and does not require additional action. 
  • If possible, reach out to your oncology team or pharmacist right away for individualized guidance. You can also contact your provincial poison control centre or go to the nearest emergency department.
  • Watch closely for urgent symptoms that need immediate medical attention such as dizziness, confusion, shortness of breath, chest pain, or unusual heartbeat.

Routine, work, exercise, and travel on TKIs

Daily routine: Building a daily routine helps keep your treatment on track. Take your medication at the same time each day, and use simple tools like phone alarms and calendar reminders to make it easier. Consider aligning doses to something you do daily, such as having breakfast. Check your supply each week so you do not run short, and request refills early around holidays or before travel. 

Taking a complete break from a TKI is discouraged because this cycling can promote resistance to the TKI over time. If side effects are tough, dose reductions are usually safer than repeated gaps. Your team can help you manage this.

Work and exercise: Many people continue working and exercising while on TKIs. If you are returning to work or other activities after a break, start gently and increase as tolerated. Short, frequent breaks, flexible hours, and a quiet workspace can make a big difference. For exercise, begin with low‑impact options (walking, stretching, gentle flow yoga) and gradually add intensity. If you notice increased fatigue, shortness of breath, dizziness, or swelling, pause and let your care team know.

Travel: Travel is possible with a bit of planning. Many ALK-positive patients travel for both short trips and longer journeys; you can join the Traveling ALKies private Facebook group to connect with others who travel often. Here are some suggestions for travelling:

• Before you go, ask your oncology pharmacist or nurse to help with timing adjustments.
• If you’re travelling for an extended period, check with your team about lab tests and how to report side effects remotely.
• Carry your medication in your hand luggage in the original packaging.
• Bring a copy of your prescription along with your personal and care team’s emergency contacts. 
• Keep doses on schedule when crossing time zones. 
• Pack extra pills in case of delays, and store them at the recommended temperature. 

Medication, food and supplement interactions with TKIs

TKIs can interact with prescription and over‑the‑counter medicines, as well as certain foods and supplements. Ask your health care team about these interactions. 

• Common prescription and medicine interactions: some heart and cholesterol medicines, blood thinners, acid reflux medications, antifungals, antibiotics, seizure medicines and birth control. 
• Food interactions: citrus products like grapefruit, pomegranate, Seville oranges and their juices can increase drug levels within your body and any current side effects you are experiencing.
• Supplement interactions: St. John’s wort and other supplements can affect the metabolism of TKIs.
• Taking with a meal: Certain TKIs, such as alectinib, should be taken with a meal that includes healthy fats to aid absorption. A high‑fat, high‑calorie meal significantly increases the drug’s exposure, helping it work more effectively, and taking it with food can lessen nausea or gastrointestinal upset noted in clinical trials. 

According to this study, “the effect of taking a dose of alectinib with a small, low-fat snack resulted in more than a third of patients not reaching the goal alectinib drug concentration in blood—which highlights the need for education and dietary modification for patients taking these drugs long term,” Dr. Patel concluded.

Practical meal options include high fat options such as eggs, avocado, nut butters, meat, and olive oil. If you’re unsure whether your TKI requires food, check the label and confirm with your oncology pharmacist or care team. 

Before starting or stopping any medications or supplements, check the medication label for interaction warnings, then confirm with your oncology pharmacist or care team. This quick review can help prevent interactions, reduce side effects, and keep your treatment working as intended.

Family planning

Decisions about fertility, pregnancy, and cancer treatment are deeply personal. These conversations are safest and most supportive when they happen early and are revisited over time with your oncology team. When available and appropriate, a referral to a fertility or reproductive health specialist may also be helpful.

Contraception while on TKIs

Some targeted therapies may pose risks to a developing fetus. If pregnancy is possible, effective contraception is recommended during treatment and for a period after stopping therapy. Here are specific details for common TKIs:

• Alectinib: Use effective birth control during treatment and for 5 weeks after the last dose.
• Lorlatinib: Use effective contraception during treatment; people who can get pregnant should use non‑hormonal methods during treatment and for at least 6 months after the final dose because lorlatinib can reduce the effectiveness of hormonal birth control. People with testes should use effective contraception during treatment and for at least 3 months after the final dose.

Fertility considerations

Some TKIs may affect fertility.

• Lorlatinib may decrease fertility in people with testes. If future fertility is a priority, ask about sperm banking or fertility preservation before starting therapy.
• For all TKIs, you are encouraged to talk with your oncology team about fertility concerns and, if appropriate, request a referral to reproductive endocrinology or fertility services.

If pregnancy occurs:

• If you become pregnant or think you might be pregnant while taking a TKI, notify your oncology team right away. Do not stop or continue treatment on your own.
• Your team may arrange urgent consultation with high‑risk obstetrics (Maternal‑Fetal Medicine) to carefully balance cancer treatment needs with potential risks to the fetus  (treatment pause, alternative therapies, timing of delivery).

Breastfeeding

• Alectinib: Do not breastfeed during treatment and for 1 week after the last dose.
• Lorlatinib: It is not known if it passes into your breast milk, however it is recommended not to breastfeed during treatment and for 7 days after the final dose.

Talk to your healthcare provider about the best way to feed your baby during your time on a TKI.

What to do when a TKI stops working

Cancer can change over time and develop resistance to the TKI treatment, resulting in progression. If this happens, options may include:

• Switching to another TKI
• Adjusting the dose
• Adding chemotherapy or radiation
• Enrolling in a clinical trial

It’s important to discuss your treatment goals, possible side effects and available alternatives with your healthcare team at each decision point. Seeking a second opinion can also be helpful.

You can contact ALK Positive Canada to ask about clinical trials.

Working with your care team

During appointments, bring a written list of questions and if possible, have a support person join you. Ask for plain‑language explanations or translations when needed.

Key questions to ask:

• What is the goal of this treatment?
• What are the potential side effects and how will we manage them?
• What are all my options if this TKI stops working?
• How often will I have scans, bloodwork or additional tests?
• Is a clinical trial right for me?

For a more comprehensive guide to having conversations with your oncologist, refer to our resource: Questions to Ask Your Oncologist: A Guide to Making Informed ALK-Positive Cancer Treatment Decisions

TKI access and coverage in Canada

Access and coverage for TKIs in Canada vary by province. Many TKIs are financially covered for you as a first-line treatment, but financial coverage for later lines (second and later TKIs) can differ and may not always be available. Oral cancer drugs may be provided through provincial programs, private insurance, or special access pathways. Talk to your oncologist, oncology pharmacist, drug access navigator and/or social worker to help you understand your coverage. It’s a good idea to keep clear records of your coverage and approvals so you can stay informed about what’s needed. 

If you want to learn more about this or connect with fellow patients and caregivers, join our private Facebook community.

Frequently asked questions (FAQs)

• Can TKIs cure ALK‑positive lung cancer?
  No. TKIs control cancer and can lead to long, durable responses. Ongoing monitoring is essential.
  
• How long will I take a TKI?
  Indefinitely. For as long as it’s effective and well tolerated.
  
• Is immunotherapy used in ALK‑positive NSCLC?
  Immunotherapy is currently less effective in ALK‑positive disease. TKIs are the best targeted option right now.
  
• What about diet, exercise, and travel?
  Many patients stay active and continue to travel; discuss individualized plans and medication timing with your care team.
  
• Can I modify TKI use if side effects are tough?
  Yes—your team may adjust dose, add supportive medications, or switch TKIs.
  
• What are common best practices for safekeeping or taking TKIs?
  Keep medication away from pets and children. No splitting or crushing unless specifically directed. 

Plain‑language glossary

• ALK fusion/rearrangement: a genomic change found in some lung cancers and other cancers that causes abnormal growth.
  
• Biomarker testing: laboratory analysis of tumour tissue or body fluids to identify genomic alterations (e.g., ALK fusions), proteins, or other targets that inform diagnosis, treatment selection, and disease monitoring. While tissue biopsy remains the standard for initial testing, “liquid biopsy” typically uses blood (plasma circulating tumour DNA). In specific situations, other fluids may be tested, including cerebrospinal fluid (CSF) for central nervous system (CNS) involvement, pleural effusion fluid in pleural disease, and, less commonly, pericardial fluid (fluid around the heart). Saliva and urine are emerging/limited sources and are not routinely used for lung cancer clinical decision‑making.
  
• CNS: central nervous system (brain and spinal cord).
  
• TKI: tyrosine kinase inhibitor—targeted pills that block signals that promote cancer growth.
  
• Adjuvant therapy: treatment after surgery or radiotherapy to lower the risk of cancer returning.
  
• Neo-adjuvant therapy: treatment given before the main therapy to shrink cancer. It is pre‑operative or pre‑radiation treatment (like chemotherapy, targeted therapy, or immunotherapy) used to reduce tumour size and improve outcomes.
  
• NSCLC: Non small cell lung cancer.

Medical disclaimer

This information is educational and does not replace medical advice. Always speak with your oncology team about your specific situation.