Stage 4 ALK Positive Lung Cancer: 53 Real Stories

Stage IV ALK Non-Small Cell Lung Cancer: Laura's Patient Story

Patient Info: Laura, Female | Stage IV

Biomarkers: ALK-positive / ALK-rearranged

Metastatic Site: Not reported

Laura was living with incurable Stage IV ALK-positive NSCLC, continuing targeted therapy and regular CT monitoring after trying multiple TKIs and a clinical trial.

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ALK-fusion lung adenocarcinoma with pleural progression: alectinib toxicity and switch to lorlatinib

Patient Info: Anonymized, Male, 50s | Stage IV

Biomarkers: EML4::ALK fusion positive

Metastatic Site: pleura

After pleural progression, disease was stable on ALK-targeted therapy; lorlatinib was tolerated after alectinib-related hemolysis and bradycardia resolved.

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Stage IV ALK Lung Cancer: Shauna's Patient Story

Patient Info: Shauna, Female, 50s | Stage IV

Biomarkers: ALK-positive

Metastatic Site: Both lungs

Shauna had Stage IV ALK-positive lung cancer involving both lungs. She was stable for about 5 years on her first TKI, had radiation for limited lung growth, and later switched to a newer TKI with stable scans. She explicitly said she had never had no evidence of disease, so the record should not be labeled NED.

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Stage IV ALK Non-Small Cell Lung Cancer: Steven's Patient Story

Patient Info: Steven Huff, Male, Under 40 | Stage IV

Biomarkers: ALK-positive

Metastatic Site: Lungs; liver; spine; sacrum; chest lymph nodes;…

Steven had Stage IV ALK-positive NSCLC and responded well to twice-daily oral targeted therapy, with several years of stable scans and a return to teaching and family life. As of September 2025, he remained on active treatment rather than being cancer-free.

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Stage IV ALK Lung Adenocarcinoma: Allison's Patient Story

Patient Info: Allison, Female, 40s | Stage IV

Biomarkers: ALK-positive fusion; later ALK resistance mutations reported

Metastatic Site: Bone (spine, femur, ribs, shoulder); brain

Allison was living with Stage IV ALK-positive lung cancer and had a strong response to targeted therapy: brain lesions cleared, most PET activity resolved, and the primary tumor shrank to about 1.5 cm. As of August 2025, she remained on second-line targeted therapy.

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ALK-rearranged Stage IVA lung adenocarcinoma: partial response to pembrolizumab as eighth-line treatment

Patient Info: Anonymized, Male, 70+ | Stage IV

Biomarkers: ALK strongly positive by IHC 3+; ALK rearrangement confirmed by FISH; PD-L1 expression 95% by 22C3 immunostaining; CEA 2.3 ng/mL at diagnosis

Metastatic Site: brain

Nine months after pembrolizumab was started as eighth-line therapy, he maintained a partial response after prior progression on multiple ALK inhibitors and chemotherapies.

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Stage IV ALK Lung Cancer: Kathrin's Patient Story

Patient Info: Kathrin, Female | Stage IV

Biomarkers: ALK-positive

Metastatic Site: bones including left foot, liver, abdomen/belly

Kathrin had Stage IV ALK-positive lung cancer with metastases including left foot/bone, liver, and abdomen. Radiation and targeted therapy worked quickly, with PET imaging after about 8 weeks showing almost everything gone; she remained on lifelong targeted therapy and did not describe being cured.

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Stage IV ALK Non-Small Cell Lung Cancer: Alisa's Patient Story

Patient Info: Alisa Secaida, Female, Under 40 | Stage IV

Biomarkers: ALK-positive / ALK-rearranged

Metastatic Site: Brain; lymph nodes

As of May 2025, after alectinib and lung surgery, pathology still showed active tumor and lymph-node cancer cells, and Alisa was receiving IMRT for remaining disease.

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EML4-ALK lung cancer: complete remission on alectinib for 4 years

Patient Info: Anonymized, Female, 60s | Stage IV

Biomarkers: EML4-ALK fusion

Metastatic Site: brain

Alectinib produced complete remission for nearly 4 years; after grade 3 colitis/ulcers, she switched to ceritinib and maintained stable tumor control without recurrent intestinal ulcers or colitis.

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Stage IV ALK Lung Cancer: Sydney's Patient Story

Patient Info: Sydney Barned, Female, Under 40 | Stage IV

Biomarkers: ALK-rearranged

Metastatic Site: brain

Living with Stage IV ALK-positive lung cancer. She had about 5.5 years of disease control on her first targeted therapy, then developed 3 brain metastases in September 2022 and switched to another targeted therapy. As of February 2025, she was working full-time and continuing treatment.

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ALK-Positive Metastatic Lung Cancer Responding to Lorlatinib During Hemodialysis

Patient Info: Anonymized, female, 70+ | Stage IV

Biomarkers: ALK rearrangement 80%; EGFR and BRAF negative; ROS1 negative; PD-L1 negative

Metastatic Site: brain

After about 1 year of lorlatinib, imaging was almost compatible with a complete response, brain MRI showed no active lesions, and she continued treatment with manageable high cholesterol as the main reported side effect.

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Stage IV ALK Lung Adenocarcinoma: Shirley's Patient Story

Patient Info: Shirley, Female, Under 40 | Stage IV

Biomarkers: ALK mutation

As of December 2024, Shirley was living with Stage IV ALK-positive lung adenocarcinoma and had stable disease on a fourth-generation ALK inhibitor clinical trial that began in July 2024.

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How Clinical Trials Helped Me Fight Stage 4 Cancer

Patient Info: Anonymized, Female | Stage IV

Biomarkers: ALK-positive / ALK-rearranged

Metastatic Site: Not specified

As of December 2024, this anonymized patient described living 10.5 years with Stage IV non-small cell lung cancer and said her current clinical-trial treatment was working, with tumors shrinking.

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Doctors Assured Me It Wasn’t Cancer!

Patient Info: Shirley, Female, Under 40 | Stage IV

Biomarkers: ALK-rearranged

Metastatic Site: mediastinum, pleura

Shirley was living with Stage IV ALK-positive lung cancer on a phase 2 ALK clinical trial; scans remained stable after 2 scan sets, but the large mass persisted.

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Stage IV ALK Lung Cancer: Amanda's Patient Story

Patient Info: Amanda, Female, Under 40 | Stage IV

Biomarkers: ALK-rearranged

Metastatic Site: pleural fluid, right clavicle lymph node

As of December 2024, Amanda had lived with Stage IV ALK-positive lung cancer for about 2 years and was taking 8 targeted-therapy pills daily.

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Stage 4 ALK-positive lung cancer: remission on lorlatinib

Patient Info: Anonymized, Male, Under 40 | Stage IV

Biomarkers: ALK-positive rearrangement; TTF-1-positive

Metastatic Site: bilateral lungs, mediastinal lymph nodes, bone, liver,…

Metastatic ALK-positive lung adenocarcinoma remained in radiologic and clinical remission on lorlatinib after CNS progression on earlier ALK-directed therapy and stereotactic radiosurgery.

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Stage IV ALK Non-Small Cell Lung Cancer: Lindsay's Patient Story

Patient Info: Lindsay Wagner, Female, 40s | Stage IV

Biomarkers: ALK-positive mutation / ALK rearrangement

Metastatic Site: brain; liver; bone; kidneys; lungs;…

As of September 2024, Lindsay was still on lorlatinib/Lorbrena with her lungs, liver, and kidneys described as stable, while isolated brain/bone areas were treated with radiation and monitored.

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Stage IV ALK Lung Adenocarcinoma: Niko's Patient Story

Patient Info: Niko, Female | Stage IV

Biomarkers: ALK mutation/rearrangement

Metastatic Site: Lymph nodes; Brain

As of May 2024, Niko’s Stage IV ALK-positive lung adenocarcinoma was controlled on ALK-targeted therapy, with no brain lesion seen on follow-up MRI/PET-CT and active disease described as dormant/stable.

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ALK-positive lung cancer treated with alectinib throughout pregnancy

Patient Info: Anonymized, Female | Stage IV

Biomarkers: ALK rearrangement / fusion-positive

Metastatic Site: pleura; liver; bone; brain

Alectinib produced a complete radiologic response and maintained intracranial control through pregnancy. She delivered a healthy infant at 37 weeks, with normal development at 26 months.

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Stage IV ALK Lung Adenocarcinoma: Keegan's Survivor Story

Patient Info: Keegan Murphy, Male, 40s | Stage IV

Biomarkers: ALK fusion mutation

Metastatic Site: Lungs; lymph nodes; ribs/bone; abdomen

As of March 2024, Keegan had gone from Stage IV ALK-positive lung adenocarcinoma with tumors in the lungs, lymph nodes, ribs, and abdomen to no evidence of disease after alectinib and surgery.

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Stage IV ALK Lung Cancer: Matt's Survivor Story

Patient Info: Matt Hiznay, Male, Under 40 | Stage IV

Biomarkers: ALK mutation / ALK-positive

Metastatic Site: Not reported

As of November 2023, Matt was a 12-year survivor with Stage IV ALK-positive lung cancer in remission, no evidence of disease, and ongoing lorlatinib treatment.

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Stage IV ALK Non-Small Cell Lung Cancer: Christine's Patient Story

Patient Info: Christine, Female, 50s | Stage IV

Biomarkers: ALK mutation / ALK-positive

Metastatic Site: Brain | Liver

As of October 2023, Christine was living with Stage IV ALK-positive NSCLC that remained in check on targeted therapy after alectinib cleared brain and liver spots and lorlatinib continued, with significant chronic side effects.

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Stage IV ALK Non-Small Cell Lung Cancer: Dan's Patient Story

Patient Info: Dan, Male, Under 40 | Stage IV

Biomarkers: ALK-positive / ALK-rearranged

As of November 2022, Dan was living with Stage IV ALK-positive non-small cell lung cancer on Alectinib, with stable scans since spring 2020 and ongoing monitoring.

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Stage IV ALK Non-Small Cell Lung Cancer: Shyreece's Patient Story

Patient Info: Shyreece, Female | Stage IV

Biomarkers: ALK rearrangement / ALK-positive

Metastatic Site: Brain

As of March 2022, Shyreece was a long-term Stage IV ALK-positive lung cancer survivor with later brain metastases, ongoing treatment decisions, and advocacy focused on biomarker testing, trials, and disparities in Black lung cancer care.

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