Living With Lung Cancer: Ask Me Anything

What is PD-L1, and what does it mean for your lung cancer treatment? Host James Hiter, who is living with lung cancer, talks with fellow LCFA Speakers Bureau member and longtime survivor Jane Perlmutter about the PD-L1 biomarker. What it is, how it fits into complete biomarker testing, and why your score is a guide, not a guarantee.

Jane shares how she responded to immunotherapy with a PD-L1 score of just 20%, why it is worth waiting for full test results before starting treatment, and the must-ask questions every newly diagnosed patient should bring to their care team.

In this episode:

What PD-L1 is, explained in plain language
How PD-L1 fits alongside other biomarkers like EGFR, ALK, and ROS1
What next-generation sequencing (NGS) is and why complete testing matters
What your PD-L1 score can and cannot tell you
How to speak up with your doctor, bring an advocate, and seek a second opinion

Learn more about PD-L1: https://lcfamerica.org/about-lung-cancer/diagnosis/understand-pd-l1/

 

Guests:
James Hiter (Host) – Patient Advocate, LCFA Speakers Bureau; founder of Streak For a Cure
Jane Perlmutter – Lung cancer survivor, patient advocate, LCFA Speakers Bureau member

Subscribe to Living With Lung Cancer: Ask Me Anything for future episodes on your favorite listening platform. 

 

Show Notes - https://lcfamerica.org/wp-content/uploads/2026/10/AMA-Fall-PD-L1-Biomarker-Show-Notes.pdf 

Transcript - https://lcfamerica.org/wp-content/uploads/2026/10/AMA-Fall-PD-L1-Biomarker-Transcript.pdf 

Watch Video - https://youtu.be/uEaRpiLKUkA 

 

Content shared in this episode reflects personal experiences and should not substitute for professional medical guidance. Please consult your healthcare provider for personalized medical advice.

What's it really like to trade an IV infusion chair for a quick injection under the skin? Host James Hiter talks with fellow patient advocate Stephanie Williams — a former registered nurse now living with ALK+ lung cancer — about subcutaneous (SubQ) drug delivery. Stephanie draws on both her nursing background and her own treatment journey to explain how SubQ compares to IV and intramuscular delivery, why it's gaining ground in lung cancer care, and how to bring it up with your own oncologist.

Guests:

James Hiter (Host) is a lung cancer patient advocate, LCFA board member, and member of LCFA's Speakers Bureau. He is living with KRAS G12D-driven lung cancer.

Stephanie Williams (Guest) is a longtime LCFA volunteer and Speakers Bureau member. Diagnosed with stage 2 non-small cell lung cancer (ALK+) at age 37, she is a former registered nurse and mother who underwent surgery and chemotherapy before transitioning to oral targeted therapy. She now advocates for patients navigating treatment options and biomarker testing.

Show Notes - https://lcfamerica.org/wp-content/uploads/2026/09/AMA-2026-Fall-Subcutaneous-Treatment-Show-Notes.pdf  

Transcript - https://lcfamerica.org/wp-content/uploads/2026/09/AMA-2026-Fall-Subcutaneous-Treatment-Transcript.pdf 

Watch Video - https://youtu.be/DMWtaCmEFio 

 

What happens after first-line chemotherapy works for small cell lung cancer? Host James Hiter sits down with long-term survivor and patient advocate Montessa Lee to talk about maintenance therapy — what it is, who it's for, and the questions every patient should bring to their care team. They cover quality of life, managing side effects, and why staying on treatment can be a proactive, hopeful step rather than a setback.

 

Guests:

James Hiter – Host, living with lung cancer

Montessa Lee – Long-term small cell lung cancer survivor, LCFA Speakers Bureau member, and patient advocate

 

Show Notes - https://lcfamerica.org/wp-content/uploads/2026/09/AMA-SCLC-Maintenance-Therapy-Show-Notes.pdf 

Transcript - https://lcfamerica.org/wp-content/uploads/2026/09/AMA-Maintenance-Therapy-SLCL-Transcript.pdf 

Watch Video -  https://youtu.be/zJqDWQNrbv4

 

 

What if "one more medication" didn't have to feel like another punch? Host James Hiter sits down with ALK+ lung cancer survivor and patient advocate Stephanie Williams to demystify subcutaneous (SubQ) treatment delivery.

Diagnosed at 37 with stage 2 non-small cell lung cancer, Stephanie brings both her patient experience and her background as a registered nurse to this conversation. She explains what SubQ delivery is, how it compares to traditional IV infusion, what to expect during an injection, and why this option can mean less anxiety, fewer infection risks, and more time back with family.

You'll also hear Stephanie's clear, compassionate advice for the newly diagnosed: get biomarker testing, seek a second opinion, and connect with others who've walked this road.

Whether you're a patient, caregiver, or simply curious about how lung cancer treatment is evolving, this episode offers practical insight and a hopeful look at where care is headed.

Guests:

Stephanie Williams, Patient Advocate, LCFA's Speakers Bureau

Host: James Hiter, Patient Advocate, LCFA Board Member

 

READY TO TALK TO YOUR DOCTOR ABOUT SubQ?

Download LCFA's free SubQ Conversation Toolkit — it includes a Treatment Delivery FAQ, a SubQ vs. IV infographic, and a Conversation Guide built specifically for your next appointment. Bring it with you and start the conversation with confidence. Get your free toolkit at: https://lcfamerica.org/about-lung-cancer/treatment/subcutaneous-delivery/ 

Transcript Link: https://lcfamerica.org/wp-content/uploads/2026/05/LCFA-AMA-SubQ-Simpler-Way-Transcript.pdf 

Show Notes Link: https://lcfamerica.org/wp-content/uploads/2026/05/LCFA-AMA-SubQ-Simpler-Way-Show-Notes.pdf  

Video: https://youtu.be/8UgbxAmuY0U 

What does 14 years of living with stage 4 lung cancer actually look like? Host Annabelle Gurwitch welcomes patient advocate, mentor, and new grandmother Lysa Buonanno for a deeply honest conversation about long-term survival with ROS1-positive lung cancer.

Diagnosed at age 40 before biomarker testing was standard of care, Lysa learned about precision medicine through an online patient group, not her doctor. That knowledge led her to switch oncologists, undergo surgery for biomarker testing, and ultimately access targeted therapy that gave her five more years before progression. Today, she's on her fifth line of treatment via a Phase 1 clinical trial.

Annabelle and Lysa dive into:

• The hidden realities of clinical trial participation (travel, reimbursement, the famous "$20 airport lunch")
• Why lung cancer trials don't use placebos
• The life-changing power of patient community and biomarker-specific support groups
• Why second opinions matter—and what to say to your doctor
• How identity shifts after a serious diagnosis
• Why we say "the drug failed the patient," not the patient failed the drug
• Becoming a grandmother after a terminal diagnosis

Whether you're newly diagnosed, considering a clinical trial, or supporting a loved one with lung cancer, this episode delivers practical wisdom, scientific insight, and genuine hope.

Guests: 
Lysa Buonanno, patient advocate and 14-year ROS1 lung cancer survivor

Annabelle Gurwitch – Host, Author, and Patient Advocate
New York Times bestselling author and LCFA Speakers Bureau member living with stage 4 EGFR+ lung cancer. Annabelle brings compassion, wit, and unflinching honesty to conversations about the real challenges of living with lung cancer. Diagnosed five years ago, she uses her platform to advocate for patients and raise awareness about treatment advances.
Connect: https://www.annabellegurwitch.com/ | @annabellegurwitch
LCFA Profile: https://lcfamerica.org/speaker-profile/annabelle-gurwitch/

Show Notes: https://lcfamerica.org/wp-content/uploads/2026/05/LCFA-AMA-Living-Long-Term-w-Lung-Cancer-Show-Notes.pdf 
Transcript: https://lcfamerica.org/wp-content/uploads/2026/05/LCFA-AMA-Living-Long-Term-w-Lung-Cancer-Transcript.pdf 
Video:

Resources: 

• LCFA Website: https://lcfamerica.org
• Living With Lung Cancer AMA Podcast: https://lcfamerica.org/living-with-lung-cancer/ask-me-anything/
• LCFA Speakers Bureau: https://lcfamerica.org/speakers-bureau/
• LCFA Second Opinion Resources: https://lcfamerica.org/resources/second-opinion/
• Biomarker Testing Information: https://lcfamerica.org/lung-cancer-info/diagnosing-lung-cancer/biomarker-testing/
• Treatment Options Overview: https://lcfamerica.org/lung-cancer-info/treatment/
• Elevate Lung Cancer Care - Learn about your advanced ROS1+ or ALK+ non-small cell lung cancer (NSCLC) diagnosis and ways to navigate care plan discussions - https://elevatelungcancercare.com/ 

 

What goes through your mind in the days before a lung cancer scan? In this honest conversation, host James Hiter talks with ALK+ patient advocate Jaymie Knox about scanxiety, drug resistance, and the mental gymnastics of living with targeted therapy.

Now seven years into treatment with alectinib, Jaymie shares why having a Plan B matters, how she keeps cancer from taking over her headspace, and why the language we use, "the medication failed me," not the other way around, makes a real difference for patients.

Together, James and Jaymie talk about:

Why drug resistance doesn't have to be the end of the road

How scanxiety changes over years of treatment

Practical ways to cope before, during, and after scans

The power of a strong care team and a clear Plan B

Hope grounded in real science and real options

Whether you're newly diagnosed or a long-term survivor, this episode offers honest encouragement for the road ahead.

Guests:

Jaymie Knox
Voices of Hope Speakers Bureau Member | ALK+ Survivor & Advocate

Jaymie was diagnosed with stage 4 ALK-positive lung cancer in December 2018 at age 32 — newly married and ready to start the next chapter of her life. Her first doctor failed to stage her cancer or explain what lay ahead. She fought for better care and never looked back. Now living in Washington, D.C., Jaymie recently fulfilled a lifelong dream of becoming a foster mom to two young children. She is a passionate advocate for mental health awareness in the lung cancer community and lives by a simple philosophy: "Have your moment, then turn the page."

James Hiter
Endurance Athlete | Voices of Hope Speakers Bureau Member | Survivor

James brings curiosity, determination, and hard-won wisdom to conversations about living with lung cancer. Diagnosed in 2017 with a rare multicystic presentation, he’s undergone three lung surgeries and now operates on roughly 55% of his original lung capacity—yet he still runs every single day. His journey through multidisciplinary tumor boards, second opinions, and ongoing surveillance gives him an intimate understanding of what patients and caregivers face. James asks the questions patients actually want answered because he’s wondered them himself.

Show Notes -

https://lcfamerica.org/wp-content/uploads/2026/04/LCFA-AMA-Scanxiety-Managing-Drug-Resistance-Fears-Notes.pdf 

Transcript -

https://lcfamerica.org/wp-content/uploads/2026/04/LCFA-AMA-Drug-Resistance-Scanxiety-Transcript.pdf 

Watch the video - https://youtu.be/O6F_OLwjRHM 

Mental health is one of the most important — and most overlooked — parts of living with lung cancer. Host James Hiter and fellow survivor Jaymie Knox have an honest conversation about the emotional toll of a stage 4 diagnosis, how to cope with scanxiety, the power of community, and why it's okay not to be okay. Jaymie shares how reframing her thinking, building a strong support network, becoming a foster mom, and leaning into purpose have helped her navigate the mental challenges of treatment. If you or someone you love is living with lung cancer, this episode is a must-listen.

Guests:

Jaymie Knox
Voices of Hope Speakers Bureau Member | ALK+ Survivor & Advocate

Jaymie was diagnosed with stage 4 ALK-positive lung cancer in December 2018 at age 32 — newly married and ready to start the next chapter of her life. Her first doctor failed to stage her cancer or explain what lay ahead. She fought for better care and never looked back. Now living in Washington, D.C., Jaymie recently fulfilled a lifelong dream of becoming a foster mom to two young children. She is a passionate advocate for mental health awareness in the lung cancer community and lives by a simple philosophy: "Have your moment, then turn the page."

James Hiter
Endurance Athlete | Voices of Hope Speakers Bureau Member | Survivor

James brings curiosity, determination, and hard-won wisdom to conversations about living with lung cancer. Diagnosed in 2017 with a rare multicystic presentation, he’s undergone three lung surgeries and now operates on roughly 55% of his original lung capacity—yet he still runs every single day. His journey through multidisciplinary tumor boards, second opinions, and ongoing surveillance gives him an intimate understanding of what patients and caregivers face. James asks the questions patients actually want answered because he’s wondered them himself.

Show Notes - https://lcfamerica.org/wp-content/uploads/2026/04/LCFA-AMA-Managing-Mental-Health-Show-Notes.pdf 

Transcript - https://lcfamerica.org/wp-content/uploads/2026/04/LCFA-AMA-Mental-Health-Transcript.pdf

Watch Video - https://youtu.be/lsen2RMilEQ 

Links and Resources

LCFA Patient Education and Support

• LCFA's Patient Education Materials — Learn about types, stages, and treatment options
• The First 7 Days — LCFA's roadmap for newly diagnosed patients
  
  Biomarker Testing and Treatment Information
  • Biomarker Testing Resources — Why testing matters and how to get it
  • ALK Positive — Learn more about ALK-positive lung cancer and current treatment options
  
  Patient Communities and Support
• Elevate Lung Cancer Care – Learn about advanced ROS1+ or ALK+ non-small cell lung cancer (NSCLC) diagnosis and ways to navigate care plan discussions
• Online Biomarker-Specific Communities - additional patient-driven organizations listing
• Ask your care team about mental health support - Counseling, social work services, palliative care, and support groups at your treatment center

Screening and Early Detection

• Low-dose CT screening can reduce lung cancer mortality by 14%–25% among eligible individuals

Clinical Trials
• LCFA Clinical Trial Resources — Tools to find and understand clinical trial options

Subscribe to Living With Lung Cancer: Ask Me Anything podcast for future episodes on your favorite listening platform.

Join LCFA's social media communities for support and information.
Facebook | Twitter | Instagram | YouTube

Lung cancer treatment takes more than physical strength — it takes time.

Host James Hiter sits down with lung cancer survivor Maida Mangiameli to talk about “time toxicity” — the often overlooked burden of treatment on daily life.

They discuss:

• What time toxicity really means for patients
• The hours spent in treatment, recovery, and waiting
• How lung cancer impacts work, routines, and independence
• The time commitment required for clinical trials
• The role caregivers play in managing that time
• How patients adjust to a new pace of life

If you or someone you love is navigating lung cancer, this episode offers a real and honest look at what treatment truly involves.

Guests:
James Hiter
Endurance Athlete | LCFA Speakers Bureau Member | Survivor

Diagnosed in 2017 with a rare lung cancer, James has navigated three surgeries and now operates at 55% lung capacity—yet he still runs daily. His journey through complex treatments and surveillance gives him a deep, personal understanding of the patient experience. James asks the tough questions because he’s lived them himself.

Maida Mangiameli
Voices of Hope Speakers Bureau Member | SCLC Survivor & Advocate

A 74-year-old survivor of extensive-stage small cell lung cancer (SCLC), Maida has been in remission for six years. From canceling a dream cruise for immediate treatment to managing spinal tumors with humor and grit, she refuses to be a statistic. Maida is a dedicated advocate for research and a powerful voice on balancing intensive medical care with a vibrant, active life.

Show Notes – https://lcfamerica.org/wp-content/uploads/2026/04/LCFA-AMA-Time-Toxicity-Show-Notes.pdf 
Transcript – https://lcfamerica.org/wp-content/uploads/2026/04/AMA-Time-Toxicity-Transcript.pdf 
Video – https://youtu.be/jgnw0B4mUZY  

Resources

• NEW! LCFA Caregiver Resources
  Everything caregivers need in one place — guidance, community, and tools for every stage of the lung cancer journey.
  lcfamerica.org/living-with-lung-cancer/caregiving-resources/
• Understanding Clinical Trials: FREE Conversation Toolkit
  For people diagnosed with lung cancer, clinical trials may offer access to promising treatments in addition to standard care.
  https://lcfamerica.org/about-lung-cancer/clinical-trials/
• Side Effects & Lung Cancer: The Hidden Realities Patients Live With
  https://lcfamerica.org/story/side-effects-lung-cancer-the-hidden-realities-patients-live-with/