Targeted Therapy for Stage 4 Lung Cancer: 213 Real Stories

Lung Cancer Patient Stories: Clinical Trials (& Patient Self-Advocacy!) | Shyreece’s Story (3 of 4)

Patient Info: Shyreece Pompey, Female | Stage IV

Biomarkers: Actionable biomarker identified by biomarker testing; specific mutation not stated

Metastatic Site: Not reported

As of March 2022, Shyreece was living with Stage IV lung cancer after moving from an initial chemotherapy cocktail to an unnamed targeted therapy pill and later participating in a clinical trial.

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Long-term erlotinib treatment alongside worsening kidney vasculitis

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

Metastatic Site: bone

Bone metastases showed osteosclerotic change after erlotinib began, and the drug continued because he was benefiting from treatment despite worsening renal vasculitis.

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Stage IV Lung Cancer: Anne's Patient Story

Patient Info: Anne LaPorte, Female | Stage IV

Biomarkers: Mutation identified by next-generation sequencing; specific mutation not reported

Metastatic Site: Spine; hips; lymph nodes; liver

As of November 2021, Anne was living with Stage IV lung cancer after oral treatment guided by tumor testing and later radiation, reporting a meaningful quality of life while advocating for self-advocacy and research.

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Stage IV Lung Cancer: Jeff's Patient Story

Patient Info: Jeff Meckstroth, Male | Stage IV

Biomarkers: Mutation identified by liquid biopsy; specific mutation not reported

Metastatic Site: Brain

As of November 2021, Jeff had lived more than 6 years after a Stage IV lung cancer diagnosis, with brain metastases cleared after an unnamed brain-penetrant therapy, while his cancer had progressed on multiple occasions.

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Stage IV Lung Cancer: Steve's Patient Story

Patient Info: Steve Castellaw, 70+ | Stage IV

Metastatic Site: right pelvis, L1 and L2 vertebrae, skull

After about 2 years on sotorasib, Steve had a large reduction in tumor size and his latest scans continued to look good while he returned to golf, exercise, and normal daily life.

Living with Cancer & My Survivorship : Lung Cancer

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

Biomarkers: EGFR-positive; T790M mutation

As of September 2021, Ashley was living with incurable but treatable EGFR-positive T790M non-small cell lung cancer and described 43 months on treatment/journey while using community support to sustain hope.

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Stage IV EGFR Lung Cancer: Ashley's Patient Story

Patient Info: Ashley, Female | Stage IV

Biomarkers: EGFR-positive; T790M-positive

Metastatic Site: Not reported

As of September 2021, Ashley was living with incurable but treatable EGFR-positive/T790M-positive lung cancer on daily osimertinib/Tagrisso with ongoing oncology monitoring and side-effect management.

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Cancer Survivor Story: How I Got Diagnosed with Lung Cancer

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

Biomarkers: EGFR-positive; T790M mutation

Metastatic Site: Both lungs

As of August 2021, Ashley had been living for almost 4 years with incurable but treatable EGFR-positive T790M non-small cell lung cancer involving many tiny nodules across both lungs.

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Facial paralysis from progression of EGFR-positive metastatic lung cancer improved with osimertinib

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

Biomarkers: EGFR exon 21 p.Leu858Arg mutation.

Metastatic Site: brain; leptomeninges and facial nerves

Osimertinib rapidly resolved the bilateral facial weakness and reduced the brain lesions, but after 15 months seizures recurred and three smaller brain metastases had increased in size.

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Alectinib restored vision from an eye metastasis of ALK-positive lung cancer

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

Biomarkers: ALK-positive.

Metastatic Site: right choroid of the eye; liver; bone; brain

After nearly eight months of response to alectinib, the lung cancer progressed in the liver, bone, and brain; lorlatinib was started, but he died on July 3, 2020.

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A regressed choroidal metastasis during EGFR-targeted lung cancer treatment

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

Biomarkers: EGFR exon 19 deletion.

Metastatic Site: liver; bone; central nervous system; right choroid

The right choroidal metastasis appeared inactive and regressed during systemic treatment, visual acuity remained 20/20, and no local eye treatment was required.

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Stage IV Mucinous Lung Cancer Treated With Afatinib and Surgery

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

Biomarkers: CD74-NRG1 fusion; ALK/ROS1/EGFR/BRAF/KRAS/MET/HER2 wild type; PD-L1 initially not expressed and later 0%-20%

Metastatic Site: bilateral lungs|bone|right adrenal gland

She was alive and receiving treatment after bone and right-adrenal progression at the latest follow-up.

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Stage IV EGFR Non-Small Cell Lung Cancer: Saila's Patient Story

Patient Info: Saila Hanninen, Under 40 | Stage IV

Biomarkers: EGFR mutation

After progression on earlier EGFR-directed treatment and other therapies, Saila began chemotherapy and her cancer was stable at the time of the story.

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Long response to afatinib in EGFR-mutated lung cancer

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

Biomarkers: EGFR L861Q mutation; EGFR G719X mutation

Metastatic Site: multiple bilateral ribs

CT at 30 months showed no recurrence, and he remained well 32 months after starting afatinib.

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

Patient Info: Tomma Hargraves, Female | Stage IV

Metastatic Site: brain

After a later brain and lymph-node relapse was brought under control, Tomma had no further cancer treatment and remained active in survivorship advocacy. She died on September 7, 2023.

Tomma Hargraves: Choosing to Help Other Patients after Surviving Lung Cancer

Patient Info: Tomma Hargraves | Stage IV

Metastatic Site: brain

After treatment and a later recurrence, Tomma went many years without further cancer treatment and became a patient navigator and advocate. She died on September 7, 2023.

Stage IV EGFR-mutated lung cancer responding to osimertinib despite new lung opacities

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

Biomarkers: EGFR L858R mutation; EGFR T790M mutation

Metastatic Site: bilateral lungs

Over the following year on osimertinib, imaging showed an excellent tumour response with gradual improvement of the lung opacities and sustained clinical improvement.

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Osimertinib rechallenge after severe pneumonitis in Stage IV lung cancer

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

Biomarkers: EGFR exon 19 deletion; acquired EGFR T790M mutation

Metastatic Site: pleura, liver, bone, leptomeninges

She initially regained a significant response after osimertinib rechallenge without recurrent pneumonitis, but developed progressive leptomeningeal disease after 11 months.

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Erlotinib-related uveitis during treatment for stage IV EGFR-mutated lung cancer

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

Biomarkers: EGFR L858R mutation-positive.

A partial response to erlotinib was maintained at six months, while the uveitis resolved and did not recur after treatment resumed at a lower dose.

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Stage IV RET Non-Small Cell Lung Cancer: Sara's Patient Story

Patient Info: Sara Whitlock, Female, 40s | Stage IV

Biomarkers: RET fusion-positive NSCLC

Metastatic Site: Brain; abdomen; bowel

As of November 2019, Sara had Stage IV RET fusion-positive NSCLC with a long-term response and no signs of cancer while taking selpercatinib/LOXO-292 on a clinical trial, with ongoing monthly follow-up.

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

Patient Info: James “Rocky” Lagno, Male | Stage IV

Biomarkers: ALK-positive

Metastatic Site: brain

After starting ceritinib through compassionate use, Rocky reported stable disease from the middle of 2013 with quality of life close to his pre-diagnosis level, while recognizing that he was not in remission or cancer-free.

Stage IV EGFR Non-Small Cell Lung Cancer: Ginger's Patient Story

Patient Info: Ginger Tam, Female | Stage IV

Biomarkers: EGFR mutation

Ginger lived for more than 5 years with metastatic lung cancer while receiving multiple research-driven treatments. She died on February 10, 2018.

Lung Cancer Metastasis to the Iris Treated With Bevacizumab

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

Metastatic Site: right iris

The iris lesion and eye symptoms improved after bevacizumab, but he later died from systemic complications of metastatic lung cancer.

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Osimertinib Improved Spinal Cord Metastases in Long-Standing Lung Cancer

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

Biomarkers: Initial surgical specimen: no detected EGFR mutation and ALK-negative. Later pleural-fluid tumor: acquired EGFR T790M mutation with no other detected EGFR mutation.

Metastatic Site: cervical and mediastinal lymph nodes; bone; brain;…

Osimertinib improved neurologic function and kept the lung cancer stable for 14 months; he later died from bacterial pneumonia.

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