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ALK ALK inhibitor Lung Cancer Non-Small Cell Lung Cancer Patient Stories Radiation Therapy Targeted Therapy Treatments

Allison’s Example of Self-Advocacy Living with Stage 4 ALK+ Lung Cancer

Allison’s Example of Self-Advocacy Living with Stage 4 ALK+ Lung Cancer

Allison describes herself as outgoing, energetic, and always on the move, so when back pain began interrupting her workouts and daily activities in late 2022, cancer wasn’t even on her radar, let along stage 4 lung cancer (ALK positive). She pushed through months of pain, assuming it was a muscular issue, until one night in May 2023, when her husband had to carry her to the bathroom. That moment shifted everything.

My Stage 4 Lung Cancer Diagnosis Video

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

After urgent care scans revealed spinal lesions, Allison’s medical background helped her piece together what was happening before doctors even confirmed it. Within weeks, she learned she had stage 4 ALK+ lung cancer, a diagnosis that felt surreal for someone who never smoked, lived a healthy lifestyle, and was deeply engaged in her family and community. The shock was intense, but Allison quickly realized that information, self-advocacy, and support would be key to moving forward.

Allison Z. stage 4 ALK+ lung cancer

Once biomarker testing identified her ALK mutation, she started an oral targeted therapy. The results were dramatic. Within a week, Allison’s pain diminished, and she was able to sleep comfortably again. However, treatment wasn’t without hurdles. She dealt with side effects like a severe rash, high cholesterol, neuropathy, and swelling, but she leaned on her medical team, expert consultations, and peer support groups to find ways to manage. Alongside medication, she underwent radiation to stabilize her femur and strengthen her bones against further damage.

Throughout her experience, Allison has emphasized the importance of self-advocacy. She highlights the importance of asking questions, seeking second opinions, and bringing ideas to doctors, especially since rare mutations like ALK require specialized expertise. She continues to work closely with her local care team and renowned experts to explore treatment strategies, including potential clinical trials and even surgical removal of her primary tumor.

Living with stage 4 ALK-positive lung cancer has changed Allison’s perspective. She now plans life in 90-day increments between scans, while still looking ahead to milestones with her kids and future adventures. Although the unknowns remain challenging, Allison focuses on hope, community, and joy. She encourages others to face the light, believe in progress, and remember that anyone with lungs can get lung cancer. Her message is one of resilience, empowerment, and choosing to live fully while navigating life with cancer.

Watch Allison’s video to find out more about her story:

  • How back pain turned out to be a sign of stage 4 ALK-positive lung cancer
  • Why never smoking didn’t protect Allison from a lung cancer diagnosis
  • The targeted therapy that brought her relief within just one week
  • How self-advocacy shaped her care and treatment decisions
  • The hope and positivity that guide her every step forward

Biomarkers and Targeted Therapy: How Lung Cancer is Treated Today


  • Name: Allison Z.
  • Age of Diagnosis:
    • 45
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
  • Staging:
    • Stage 4
  • Mutation:
    • ALK
  • Symptom:
    • Severe back pain
  • Treatments:
    • Targeted therapy: ALK inhibitors
    • Radiation therapy
Allison Z. stage 4 ALK+ lung cancer
Allison Z. stage 4 ALK+ lung cancer
Allison Z. stage 4 ALK+ lung cancer
Allison Z. stage 4 ALK+ lung cancer
Allison Z. stage 4 ALK+ lung cancer
Allison Z. stage 4 ALK+ lung cancer
Allison Z. stage 4 ALK+ lung cancer

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.


Allison Z. stage 4 ALK+ lung cancer
Thank you for sharing your story, Allison!

Inspired by Allison's story?

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More ALK+ Lung Cancer Stories

Allison Z. stage 4 ALK+ lung cancer

Allison Z., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptom: Severe back pain
Treatments: Targeted therapy (ALK inhibitors), radiation therapy
Kathrin W. stage 4 ALK+ lung cancer

Kathrin W., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Weakness, decline of performance in sports, depression, pain in left foot
Treatments: Radiation therapy, targeted therapy
Stephanie W. feature profile

Stephanie W., Non-Small Cell Lung Cancer, ALK+, Stage 2B



Symptoms: Persistent cough, wheezing
Treatments: Surgery (bilobectomy), chemotherapy, targeted therapy

Lindsay W., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptom: Severe pain in her side

Treatments: Chemotherapy (targeted therapy), radiation
Shyreece P.

Shyreece Pompey, Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic) (Update)



Symptom: Shortness of breath
Treatments: Chemotherapy (carboplatin, pemetrexed & bevacizumab), targeted therapy (crizotinib & alectinib), AT13387 (HSP90 inhibitor)

Categories
ALK Lung Cancer Non-Small Cell Lung Cancer Patient Stories Radiation Therapy Targeted Therapy Treatments

From Foot Pain to Lung Cancer: Kathrin’s Unexpected Stage 4 ALK+ Diagnosis

From Foot Pain to Lung Cancer: Kathrin’s Unexpected Stage 4 ALK+ Diagnosis

When Kathrin was diagnosed with stage 4 ALK+ lung cancer in 2024, it came as a complete shock. She didn’t have a cough, chest pain, or shortness of breath — none of the symptoms you’d expect. Instead, it all started with subtle signs: persistent fatigue, frequent illness, and a lingering pain in her left foot that she chalked up to an injury.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Being a fitness professional, Kathrin assumed it was nothing serious, but after the pain worsened, an MRI revealed something unexpected: a tumor in her foot. Initially thought to be benign, the biopsy showed it was a malignant metastasis. From there, a full-body PET/CT scan uncovered the real culprit: stage 4 ALK+ lung cancer, which had already spread to her bones, abdomen, and liver.

Kathrin W. stage 4 ALK+ lung cancer

Despite the shock and the immediate fear of not surviving, biomarker testing provided a silver lining. Kathrin was ALK-positive, making her eligible for targeted therapy. Treatment began with radiation on her foot, followed by a daily ALK inhibitor pill. Within weeks, the treatment produced remarkable results.

Kathrin’s scans looked almost clear, which felt like being handed back her life. She describes this part as surreal, going from imagining death to being filled with hope. While the physical treatment has gone well, the emotional part has been more complex. Even though the cancer was under control, the reality of living with an incurable condition remains. She knows it may come back, so she consciously chooses to focus on what she can control: her mindset, her movement, and her moments of joy.

Exercise has been Kathrin’s anchor. Even during radiation, she kept moving. For her, movement isn’t just fitness; it’s therapy. It’s how she reconnects with herself, processes her emotions, and taps into her inner strength. She emphasizes the importance of staying active, not just for the body but for mental clarity and emotional balance.

Her story highlights a powerful truth: stage 4 ALK+ lung cancer doesn’t always look like what we expect, especially in women. Kathrin’s experience is a reminder of the importance of advocating for your health, listening to your body, and honoring your strength, even when life throws something unimaginable your way.

Watch Kathrin’s full interview to learn more about her story:

  • She had no cough, just foot pain. That’s how her stage 4 ALK+ lung cancer was discovered.
  • Kathrin opens up about the emotional whiplash of a sudden diagnosis.
  • How yoga and exercise became her daily lifeline through stage 4 ALK+ lung cancer.
  • Why Kathrin believes powerful treatments and positivity can change everything.

  • Name: Kathrin W.
  • Age of Diagnosis:
    • 44
  • Diagnosis:
    • Lung Cancer
  • Staging:
    • Stage 4
  • Mutation:
    • ALK+
  • Symptoms:
    • Weakness
    • Decline of performance in sports
    • Depression
    • Pain in left foot
  • Treatments:
    • Radiation therapy
    • Targeted therapy
Kathrin W. stage 4 ALK+ lung cancer
Kathrin W. stage 4 ALK+ lung cancer
Kathrin W. stage 4 ALK+ lung cancer
Kathrin W. stage 4 ALK+ lung cancer
Kathrin W. stage 4 ALK+ lung cancer
Kathrin W. stage 4 ALK+ lung cancer
Kathrin W. stage 4 ALK+ lung cancer

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.


Kathrin W. stage 4 ALK+ lung cancer
Thank you for sharing your story, Kathrin!

Inspired by Kathrin's story?

Share your story, too!


More ALK+ Lung Cancer Stories

Allison Z. stage 4 ALK+ lung cancer

Allison Z., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptom: Severe back pain
Treatments: Targeted therapy (ALK inhibitors), radiation therapy
Kathrin W. stage 4 ALK+ lung cancer

Kathrin W., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Weakness, decline of performance in sports, depression, pain in left foot
Treatments: Radiation therapy, targeted therapy
Stephanie W. feature profile

Stephanie W., Non-Small Cell Lung Cancer, ALK+, Stage 2B



Symptoms: Persistent cough, wheezing
Treatments: Surgery (bilobectomy), chemotherapy, targeted therapy

Lindsay W., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptom: Severe pain in her side

Treatments: Chemotherapy (targeted therapy), radiation
Shyreece P.

Shyreece Pompey, Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic) (Update)



Symptom: Shortness of breath
Treatments: Chemotherapy (carboplatin, pemetrexed & bevacizumab), targeted therapy (crizotinib & alectinib), AT13387 (HSP90 inhibitor)

Categories
Chemotherapy Clinical Trials Lung Cancer Patient Stories Targeted Therapy Taxol (paclitaxel) Treatments

Shirley’s Stage 4 Lung Cancer Story

Shirley’s Metastatic Lung Cancer Story

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

At age 34, Shirley, a translator from Southern California, faced the unexpected news that she had stage 4 lung cancer with an ALK mutation.

Shirley’s journey began in 2021, during the height of the COVID-19 pandemic, with a persistent cough that refused to go away despite multiple rounds of antibiotics and testing. Her doctors reassured her it was likely a minor infection, even though her symptoms grew to include severe back pain. Finally, a CT scan revealed a mass, but doctors still downplayed the likelihood of cancer due to her young age and history. Initially undiagnosed, she faced months of additional procedures, including 2 bronchoscopies and a wedge resection surgery. Only after extensive testing did she receive the staggering news: she had adenocarcinoma, initially suspected to have originated elsewhere in her body. Despite various scans showing otherwise, she spent weeks fearing widespread cancer.

Determined to take control, Shirley switched hospitals, explored different insurance options when she got married to her longtime boyfriend, and underwent chemotherapy. The side effects were brutal, including severe hair loss, swallowing difficulties, and infections that required hospitalization. Finally, genetic testing revealed she had an ALK mutation, allowing her to switch to a targeted therapy in pill form, providing 2 years of relative stability and an improved quality of life. Then, in 2023, the cancer began progressing again, necessitating further procedures and consultations. When her initial targeted therapy became ineffective, Shirley bravely enrolled in a clinical trial for a 4th-generation ALK inhibitor in July 2024. This new medication has had minimal side effects, with her tumor currently stable. Although she initially hesitated to join a clinical trial, Shirley realized its promise and now appreciates the thorough monitoring and regular scans.

Living with an incurable cancer has profoundly affected Shirley’s outlook on life. “It feels like I have a bomb inside of me,” she says, expressing the constant awareness of her tumor’s presence. With humor as her coping mechanism, Shirley shares darkly comedic memes and gives villain names to her tumor. Her husband and fellow cancer patients have become her pillars of support, as she finds comfort and laughter within her community of ALK patients, appreciating the unique understanding they bring.

Despite the trials of cancer, Shirley finds solace in sharing her experience, including on her Instagram, to help others. Her advice to newly diagnosed patients is heartfelt: avoid over-Googling statistics and connect with others who understand the cancer journey. “You’re not a statistic,” she insists. “See yourself as an individual.”

Shirley’s journey is one of resilience and transformation, where she now cherishes connections and purpose. By sharing her story, she aims to support others, proving that even amid uncertainty, there is value in embracing life with hope and humor.


  • Name:
    • Shirley M.
  • Diagnosis:
    • Lung cancer
  • Staging:
    • Stage 4
  • Initial Symptoms:
    • Persistent cough
    • Wheezing
    • Back pain
    • Shortness of breath
  • Treatment:
    • Chemotherapy
    • Targeted therapy
    • Radiation

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.


Thank you for sharing your story, Shirley!

Inspired by Shirley's story?

Share your story, too!


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