Living with Lung Cancer: 5 Things I Wish Someone Had Told Me
This story was written by Barbara, an actual patient.
One Thanksgiving, my granddaughter gave me her cold – and I’m lucky she did (strange thing to say, I know). While she bounced back from the cold quickly, my cough lingered and worsened. Between Christmas and New Year’s, I went to a walk-in clinic, and they ordered an x-ray to rule out pneumonia. A small shadow in my lung, however, suggested something else was seriously wrong. It’s that “cold” that led me to my diagnosis of lung cancer, which very possibly could have been years later otherwise.
That fateful day put me on an unexpected journey with non-small cell lung cancer (NSCLC). It was years before I learned I had anaplastic lymphoma kinase-positive (ALK+) metastatic non- small cell lung cancer (mNSCLC); a type of advanced-stage NSCLC caused by a change in the structure of a gene called ALK.1 Metastatic meant the cancer was spreading to other parts of my body.
NSCLC is the most common type of lung cancer, but only 3-5% of NSCLC cases have the ALK mutation.2,3 My situation and diagnosis were rare – for many reasons.
Learning about the specific type of lung cancer I had changed the course of my journey and taught me to face an incurable condition with optimism and hope. There are a few things I learned along the way that could someday help others:
1. You can get lung cancer even if you never smoked.
Lung cancer was the furthest thing from my mind before my x-ray. I never smoked a day in my life, and my family had no history of the disease. As it turns out, ALK+ NSCLC has unique attributes compared to other forms of lung cancer. For example, while the link between lung cancer and smoking is well established, ALK+ NSCLC is most frequently seen in non-smokers or light smokers, as well as in younger patients.4,5 While I was 72 years old when I was diagnosed, the median age of a patient with ALK+ NSCLC at diagnosis is 52 – 18 years younger than the median age of the lung cancer population as a whole.5
2. Having the right care team is critical.
I had a biopsy soon after the x-ray at the walk-in clinic. Following the biopsy, my surgical care team handed me a packet of information to bring to my internist. Reading the letter that wasn’t intended for me is how I learned my tumor was malignant. No one should find out they have cancer that way! After that experience, I realized how important it was to research and interview care teams to find one that I liked and trusted. I met with three different oncologists and chose one who is fabulous, as is his entire team. They listen to my concerns and take a collaborative approach.
3. Have support lined up – and don’t be afraid to use it.
Friends and family will want to help – and you should let them! You would do the same for them if the situation was reversed. During my first round of chemotherapy, I leaned on my husband for day-to-day support, while friends sent me lots of food and gift cards. But when my cancer returned in 2019, my husband had Alzheimer’s disease, so I needed more help. We enlisted a home health aide to help him, and I started to depend more on friends to drive me to appointments and help with other daily tasks.
4. Genetic testing isn’t a given (ask for it!).
After my cancer returned, the initial plan was for chemotherapy and radiation followed by a year of immunotherapy. However, after learning I had ALK+ mNSCLC through genetic testing, we nixed that plan because immunotherapy is not very effective for people with the ALK gene. I was happy to learn I didn’t have to go through the infusions required for immunotherapy. More importantly, by identifying the mutation that was driving my cancer, my care team could use a treatment designed to target it. This was all thanks to genetic testing.
Genetic testing doesn’t always happen, and not every doctor uses it. I recommend asking about genetic testing following a lung cancer diagnosis so your care team can learn as much as possible about your cancer and target your treatments accordingly.
5. ALK+ NSCLC is treatable.
Once my oncologist knew I had ALK+ mNSCLC, I started ALUNBRIG® (brigatinib) in August 2019. ALUNBRIG is an oral therapy approved to treat adult patients with ALK+ mNSCLC.6 Since then, my PET scans have improved, and my tumors have shrunk. I still have lung cancer, and I still meet with my oncologist every few months to get regular PET scans, MRIs and bloodwork, but I worry less about the cancer progressing and impacting my daily life. This peace of mind lets me focus more on things I enjoy – like watercolor painting, traveling, and spending time with my kids and grandkids. I look forward to doing more of these things in the future.
This experience has truly allowed me to live my mantra: don’t dwell on your diagnosis. Stay positive and focus on the things that make life worth living.
Not every patient will have the same experience with ALUNBRIG. The most common side effects include diarrhea, fatigue, nausea, rash, cough, muscle pain, headache, high blood pressure, vomiting and difficulty breathing. All treatment decisions should be discussed with a doctor.
Learn more about ALK+ mNSCLC and ALUNBRIG as a potential treatment option by visiting ALUNBRIG.com.
What is ALUNBRIG?
ALUNBRIG is a prescription medicine used to treat adults with non-small cell lung cancer (NSCLC):
- that has a certain type of abnormal anaplastic lymphoma kinase (ALK) gene, and
- that has spread to other parts of your body
It is not known if ALUNBRIG is safe and effective in children.
ALUNBRIG can cause serious side effects, including:
- Lung problems. ALUNBRIG may cause severe or life-threatening swelling (inflammation) of the lungs any time during treatment and can lead to death. These lung problems happen especially within the first week of treatment with ALUNBRIG. Symptoms may be similar to those symptoms from lung cancer. Tell your healthcare provider right away if you have any new or worsening symptoms, including:
- High blood pressure (hypertension). ALUNBRIG may cause high blood pressure. Your healthcare provider will check your blood pressure before starting and during treatment with ALUNBRIG. Tell your healthcare provider right away if you get headaches, dizziness, blurred vision, chest pain or shortness of breath.
- Slow heart rate (bradycardia). ALUNBRIG may cause very slow heartbeats that can be severe. Your healthcare provider will check your heart rate during treatment with ALUNBRIG. Tell your healthcare provider right away if you feel dizzy, lightheaded, or faint during treatment with ALUNBRIG. Tell your healthcare provider if you take any heart or blood pressure medicines.
- Vision problems. ALUNBRIG may cause vision problems. Your healthcare provider may stop ALUNBRIG and refer you to an eye specialist if you develop severe vision problems during treatment with ALUNBRIG. Tell your healthcare provider right away if you have any loss of vision or any change in vision, including:
- Muscle pain, tenderness, and weakness (myalgia). ALUNBRIG may increase the level of an enzyme in your blood called creatine phosphokinase (CPK), which may be a sign of muscle damage. Your healthcare provider will do blood tests to check your blood levels of CPK during treatment with ALUNBRIG. Tell your healthcare provider right away if you get new or worsening signs and symptoms of muscle problems, including unexplained muscle pain or muscle pain that does not go away, tenderness, or weakness.
- Inflammation of the pancreas (pancreatitis). ALUNBRIG may increase enzymes in your blood called amylase and lipase, which may be a sign of pancreatitis. Your healthcare provider will do blood tests to check your pancreatic enzyme blood levels during treatment with ALUNBRIG. Tell your healthcare provider right away if you get new or worsening signs and symptoms of pancreatitis, including upper abdominal pain that may spread to the back and get worse with eating, weight loss, or nausea.
- Liver problems (hepatotoxicity). ALUNBRIG may increase the levels of bilirubin in your blood and enzymes called aspartate aminotransferase (AST) and alanine aminotransferase (ALT) in your blood, which may be a sign of liver problems. Your healthcare provider will do blood tests to check your liver during treatment with ALUNBRIG. Tell your healthcare provider right away if you get new or worsening signs or symptoms, including:
- High blood sugar (hyperglycemia). ALUNBRIG may increase your blood sugar levels. Your healthcare provider will do blood tests to check your blood sugar levels before starting and during treatment with ALUNBRIG. Your healthcare provider may need to start or change your blood sugar medicine to control your blood sugar levels. Tell your healthcare provider right away if you get new or worsening signs and symptoms of hyperglycemia, including:
The most common side effects of ALUNBRIG include diarrhea, fatigue, nausea, rash, cough, muscle pain, headache, high blood pressure, vomiting and difficulty breathing.
ALUNBRIG may cause fertility problems in males. This may affect your ability to father a child. Talk to your healthcare provider if you have concerns about fertility.
These are not all the possible side effects of ALUNBRIG. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.
What should I avoid while taking ALUNBRIG?
- Limit your time in the sun during treatment with ALUNBRIG and for at least 5 days after your final dose. ALUNBRIG may make your skin sensitive to sunlight. You may burn more easily and get severe sunburns. When you are in the sun, wear a hat and protective clothing, and use a broad-spectrum sunscreen and lip balm with a Sun Protection Factor (SPF) of 30 or greater to protect against sunburn.
- Avoid eating grapefruit or drinking grapefruit juice during treatment with ALUNBRIG. Grapefruit may increase the amount of ALUNBRIG in your blood.
Before you take ALUNBRIG, tell your healthcare provider about all of your medical conditions, including if you have lung or breathing problems, high blood pressure, a slow heartbeat, or any vision problems, have or have had pancreatitis, have liver problems, have diabetes mellitus or glucose intolerance, have kidney problems or are on dialysis, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed.
- ALUNBRIG can harm your unborn baby. Your healthcare provider will determine whether or not you are pregnant before you start treatment with ALUNBRIG. Tell your healthcare provider right away if you become pregnant during treatment with ALUNBRIG or think you may be pregnant.
- Females who are able to become pregnant should use effective birth control during treatment with ALUNBRIG and for at least 4 months after the final dose of ALUNBRIG. Talk to your healthcare provider about birth control choices that are right for you during treatment with ALUNBRIG.
- Males who have female partners who are able to become pregnant should use effective birth control during treatment with ALUNBRIG and for at least 3 months after the final dose of ALUNBRIG.
- It is not known if ALUNBRIG passes into your breast milk. Do not breastfeed during treatment with ALUNBRIG and for 1 week after the final dose of ALUNBRIG.
Tell your healthcare provider about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, or herbal supplements.
- Koivunen JP, Mermel C, Zejnullahu K, et al. EML4-ALK fusion gene and efficacy of an ALK kinase inhibitor in lung cancer. Clin Cancer Res. 2008; 14(13):4275-83.
- American Cancer Society. What Is Lung Cancer. https://www.cancer.org/cancer/lung- cancer/about/what-is.html Accessed March 2023.
- Gainor JF, Varghese AM, Ou SH, et al. ALK rearrangements are mutually exclusive with mutations in EGFR or KRAS: an analysis of 1,683 patients with non-small cell lung cancer. Clin Cancer Res. 2013; 19 (15):4273-81.
- American Cancer Society. What Causes Lung Cancer? 2019. https://www.cancer.org/cancer/lung-cancer/causes-risks-prevention/what-causes.html Accessed May 2023.
- Solomon B, Christine M Lovly. Anaplastic lymphoma kinase (ALK) fusion oncogene positive non-small cell lung cancer. UpToDate. 2023;110
- ALUNBRIG (brigatinib) Consumer Important Safety Information. Takeda Pharmaceutical Company Limited. 2022.