Stage 4 ALK Positive Lung Cancer: 53 Real Stories

Stage IV ALK Lung Cancer: Leslie's Patient Story

Patient Info: Leslie, female | Stage IV

Biomarkers: ALK-positive

Metastatic Site: brain

Her brain metastases responded to targeted therapy without radiation, and she remains active and planning for the future while participating in a clinical trial.

GO2 FoundationRead more →

Stage IV ALK Lung Cancer: Frank's Survivor Story

Patient Info: Frank Sierawski, Male | Stage IV

Biomarkers: ALK-positive

Frank was disease-free for more than 7 years while continuing his second ALK-targeted tyrosine kinase inhibitor after lobectomy and brain radiation.

Stage IV ALK Lung Cancer: Michelle's Patient Story

Patient Info: Michelle, Female | Stage IV

Biomarkers: ALK-positive

Metastatic Site: leptomeninges and cerebrospinal fluid / central…

Targeted therapy and proton craniospinal irradiation eliminated detectable leptomeningeal disease. Treatment side effects later passed, and Michelle continued rehabilitation.

Turning the Tide: My Journey into Lung Cancer Advocacy

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

Biomarkers: ALK-positive

She continued living with Stage IV ALK-positive NSCLC while advocating for research funding, traveling, and returning to tap dancing.

Stage IV ALK Lung Cancer: Sharon's Patient Story

Patient Info: Sharon Schneider, Female, 50s | Stage IV

Biomarkers: ALK-positive

Metastatic Site: brain

After brain metastases and about 2 years of oral chemotherapy, Sharon remained in treatment, resumed jogging at least 3 days a week, and completed her first marathon at age 50.

Diagnosed at 38, a Veteran, Living with ALK-Positive Lung Cancer: Laura's Story

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

Biomarkers: ALK-positive

Three years after diagnosis, Laura remained on lorlatinib with improved energy and quality of life while continuing to live with Stage IV ALK-positive lung cancer.

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

Patient Info: Duane Steiner, Male, 50s | Stage IV

Biomarkers: ALK-positive / ALK gene mutation identified by molecular or genomic testing

Living more than 6 years with incurable Stage IV ALK-positive lung cancer, supported by targeted therapy, clinical-trial participation, Hope Lodge access, and periodic monitoring.

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

Patient Info: Suzanne, Female | Stage IV

Biomarkers: ALK mutation identified on tissue biopsy; blood biomarker test was negative

Metastatic Site: Not specified

Stage IV ALK-positive lung cancer was stable for almost 4 years on alectinib before progression in mid-2023; Suzanne moved to brigatinib and radiation and was working toward stability again.

Lung Cancer Research FoundationRead more →

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

Patient Info: Donna Preston, Female | Stage IV

Biomarkers: ALK mutation

Metastatic Site: Not specified

Living nearly 9 years after a January 2015 Stage IV ALK-positive lung cancer diagnosis, with ongoing targeted therapy and good functional status; exact drug name is not reported.

Lung Cancer Research FoundationRead more →

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

Patient Info: Marley, Female | Stage IV

Biomarkers: ALK-positive

Metastatic Site: Chest lymph nodes; axillary lymph nodes; lymph nodes…

Living with Stage IV ALK-positive NSCLC involving lymph nodes and malignant pleural fluid, with scans every 3 months; specific treatment regimen is not reported.

Lung Cancer Research FoundationRead more →

Stage IV ALK Lung Cancer: Elizabeth's Patient Story

Patient Info: Elizabeth Moir, Female, Under 40 | Stage IV

Biomarkers: ALK mutation / ALK-positive

Metastatic Site: Liver; bones

Elizabeth passed away on August 27, 2021 at age 32 from complications of Stage IV ALK-positive lung cancer, after earlier achieving a July 2019 scan with no evidence of disease on oral targeted therapy.

Lung Cancer Research FoundationRead more →

Stage IV ALK Lung Cancer: Duncan's Patient Story

Patient Info: Duncan Edmonstone, Male, 50s | Stage IV

Biomarkers: ALK-positive / ALK+ mutation

Metastatic Site: Brain

Living 6 years after Stage IV ALK-positive lung cancer with brain metastasis, doing well on ongoing alectinib targeted therapy with minimal side effects.

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

Patient Info: Linnea Olson, Female, 40s | Stage IV

Biomarkers: ALK mutation / ALK-rearranged lung cancer

Metastatic Site: Lungs / intrapulmonary disease

Living long term with Stage IV ALK-positive NSCLC; ALK-targeted clinical trials controlled disease for years but were described as disease control rather than cure.

Massachusetts General HospitalRead more →

Stage IV ALK Lung Cancer: Jay's Survivor Story

Patient Info: Jay Petri, Male | Stage IV

Biomarkers: ALK mutation / ALK-rearranged lung cancer

Metastatic Site: Not reported

Stage IV ALK-positive lung cancer treated through clinical trials at Mass General; he reported being cancer-free for nearly 1.5 years after going through 3 trials.

Massachusetts General HospitalRead more →

Stage IV ALK Lung Cancer: Jeff's Patient Story

Patient Info: Jeff Meckstroth, Male | Stage IV

Biomarkers: ALK-positive driver mutation

Metastatic Site: Brain

More than 6 years after an initial prognosis of about 6 months, Jeff was alive, preparing to retire and continuing biomarker-guided care; the brain metastases had disappeared within a few months of the therapy change.

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Stage IV ALK Lung Cancer: Nancee's Patient Story

Patient Info: Nancee Pronsati, Female | Stage IV

Biomarkers: ALK-positive; ALK fusion/rearrangement

Metastatic Site: bilateral lung nodules, brain

As of May 2026, Nancee had lived about 10 years with metastatic ALK-positive lung cancer, including brain progression, and continued long-term targeted therapy with quality of life as a major goal.

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Stage IV ALK Lung Cancer: Jake's Patient Story

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

Biomarkers: ALK-positive mutation

Metastatic Site: brain; lung; ankle bone

As of May 2026, Jake was 28 and had lived more than 13 years with Stage IV ALK-positive lung cancer, with ongoing treatment history including targeted therapy, surgeries, radiation, clinical-trial therapy, and recent chemotherapy.

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Stage IV ALK Lung Cancer: Kartik's Patient Story

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

Biomarkers: EML4/ALK mutation

Kartik was diagnosed with Stage IV ALK-rearranged lung cancer at age 28, continued working for several years through a targeted clinical trial, and died in 2015 at age 34.

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Stage IV EGFR Lung Cancer: Kelsey's Patient Story

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

Biomarkers: EGFR mutation; later ALK mutation after progression

Metastatic Site: Bone — pelvis and spine/L5

Living with Stage IV lung cancer on a clinical trial after progression, with current treatment described as working and quality of life improved.

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Stage IV ALK Non-Small Cell Lung Cancer: Megan's Survivor Story

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

Biomarkers: ALK-positive

Metastatic Site: Spine; chest lymph nodes; stomach lymph nodes

Stage IV ALK-positive non-small cell lung cancer responded dramatically to daily targeted therapy, with latest scans described as no evidence of disease while she continues long-term targeted therapy.

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

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

Biomarkers: ALK-positive / ALK-rearranged after repeat Tempus testing

Metastatic Site: Pelvis; spleen

As of February 2026, ALK-targeted therapy had improved Clara’s symptoms enough that she no longer needed a walker or cane, and upcoming scans would determine whether pelvic tumor surgery remained an option.

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

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

Biomarkers: ALK mutation / ALK-positive

Metastatic Site: ovaries; spine; liver; lung

Stage IV ALK-positive NSCLC is being managed with ALK-directed treatment; follow-up scans were described as improving, but the source does not state complete remission.

The Patient StoryRead more →

Stage IV ALK Lung Cancer: Ruchira's Survivor Story

Patient Info: Ruchira, Female | Stage IV

Biomarkers: ALK-positive

Metastatic Site: Not reported

Although the disease progressed to Stage IV after lobectomy, ALK testing led to lorlatinib; she reported no evidence of disease after 3 months and continued daily targeted therapy.

The Patient StoryRead more →

Stage IV non-small cell lung cancer: treatment and follow-up story

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

Biomarkers: ALK mutation/rearrangement; EGFR negative

Metastatic Site: Bone, including left humerus

As of January 2026, he described about 3 years on ALK-targeted oral therapy, feeling well, exercising 3-4 times per week, and living close to normal life with Stage IV ALK-positive lung cancer.

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