Lung Cancer

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another question about Tagrisso not working and alternatives

Hello Natalieaster, Welcome…

By JanineT GRACE … on Mon, 09/22/2025 - 14:30

The information you share is…

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Hi Mel, I'm sorry for the…

By JanineT GRACE … on Thu, 08/28/2025 - 11:26

Lung Cancer Member Updates

Hello.
I know this post is…

By mel on Wed, 08/27/2025 - 08:20

Please feel free to comment or ask a question!

dbrock — Fri, 31 Aug 2018 22:35:17 +0000

Please feel free to comment or ask a question! dbrock

Posts:162

Operations Director, GRACE

Fri, 08/31/2018 - 15:35

dbrock

Posts:162

Operations Director, GRACE

Welcome to the new GRACE site!

Here we hope to provide a new and friendly place for our community members, that goes beyond what our old forum did. Our amazing faculty is building and we would like to continue to share their knowledge with others, to provide a place for those dealing with more types of cancers, including Lung.

Share our forum with others, and please consider this a safe place to discuss and ask questions about living with cancer.

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009. Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education.

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Reply # - May 22, 2019, 10:36 PM

10-year update.

shy one

Posts: 49

It was in May of 2004 that I came home from a doctor's appointment to tell my husband I had both good and bad news. "The good news is I don't have (whatever I went to the doctor for). The bad news is I probably have lung cancer." My husband, of course, was appropriately sad and supportive. The doctor referred me to a pulmonologist and an oncologist at the medical school she went to, and I had a lung biopsy which showed NSCLC (adenocarcinoma, BAC). I had a number of the usual treatments: chemotherapy and radiation therapy within 3 months, then hospitalization for the side effects or those, then lung surgery which just took out a couple of wedges of my left lower lobe because the surgeon changed her mind about removing my left lung, then a new oncologist, then Alimta, then surgery and radiation treatment for thyroid cancer (my second primary cancer), then a PET scan at the request of my new surgeon preparatory to more lung surgery to actually remove my left upper lobe. The PET scan showed two cancerous nodules in my right breast, which were confirmed by a biopsy right away. We went ahead with the lung surgery (first thingns first) and postphoned the breast surgery for 3-4 months so my husband and I could go on a 2-week cruise around south-east Asia. Against everyone's suggestion, I decided to have a double mastectomy instead of the recommended lumpectomy, and I'm glad I did, because it turned out there were three, not two, cancerous nodules in my breast (surely not because it was my third cancer?!!). No chemo or radiatiom after the surgery, just oral meds, and no significant side effects. (And whoopee I could throw away my bras and would never need to wear them again.) No treatment for the lung cancer for a couple of years, becaused progression was very slow. Then it "spoke up" again. Tarceva had just become available and we already knew I had the right mutation for that, so I went on that for two years until it stopped working for me. But by now Tagrisso had become available so another biopsy was done, and I now had the right mutation for Tagrisso. Hooray. (But doesn't it sound odd to cheer for a mutation?) I have now been on Tagrisso for two+ years, and my CT scans continue to show very slow progression (in all lobes on the right, plus lymph nodes in my neck and elsewhere) but such that my oncologist feels it's safe enough to cut CTs back to twice a year. It's been ten years now since I was diagnosed with lung cancer, and I'm tired a lot (but I was tired a lot because of the lupus, before cancer). I'm mostly feeling good except for arthritis and the fatigue. Oh, other things are still going on--I still have lupus, and I have developed mild heart disease, and I had a fall 3 years ago in which I hit my head and was hospitalized for a month while I learned to walk and talk again, and now I have wet macular degeneration (but I got into the first clinical study anyone has ever allowed me to enroll in--the lupus made me ineligible for lung cancer clinical trials) but those things are just life, genetics, and some past bad habits, I am convinced, and are unrelated to any of the cancers. (Well, the lung cancer is no doubt related to a bad habit, even though I quit smoking 30 years ago! and having had three cancers is probably related to a genetic mutation of its own.) I'm feeling surprisingly lucky. Despite everything, I'm alive and reasonably happy. I never expected to be immortal and I know that life ends the same way for everyone. I'm as old as anyone in my family has ever been, and while there are things I can complain about (damn but I'd like to do life all over again!), there's nothing I can do about some of them. They're out of human ability, or mine, at any rate, or they're in the past, and all I can do is try to deal with today and, with luck, tomorrow. I thank GRACE and it's fine staff, professionals, volunteers, and the other correspondents for all the support and helpful information I have received, even though it's been a while since I've been on-line (except to eavesdrop). I especially thank Dr. West, for inpressing and inspiring my oncologist (and me as well). I also apprciate the wonderful physicians and other health-care staff who have taken such good care of me over these past ten years. And I am so very fortunate for my wonderful husband and step-children, who have been enormously supportive and helpful along this path.

I don't know which name I've most often signed on with, Shy One or SoCal, but it's really Nan. And I'll aplogize for my verbosity. My typos I blame on the macular degeneration. It's take me three tries to get this down.

Reply # - May 23, 2019, 08:09 AM

10-year update

Jim C GRACE Co…

Posts: 147

GRACE Community Outreach Team

Hi Nan,

It's so good to hear from you. I think you've most often posted here as SoCal, but what's most important is the news that you're continuing to fight the good fight, and doing well. It sounds as though you've had quite a bumpy ride (forgive the huge understatement!), but it appears that with the help of your family and medical team, you've overcome many obstacles. And we're delighted to hear that we may have helped in some small way.

All the best to you and your family, and feel free to update us at any time...we love to hear good news!

Jim C Forum Moderator

Reply # - June 3, 2019, 09:32 AM

Hi Nan!It's so good to hear

JanineT GRACE …

Posts: 710

GRACE Community Outreach Team

Hi Nan!

It's so good to hear from you and to know you're still living life despite the illnesses you fight every day. You know most people aren't faced with so many life threatening illnesses, you're quite the warrior. If the saying, what doesn't kill you only makes you stronger is true you are one strong person. Thank you for sharing your story it's worth so much to others to hear that you can live life well past the initial diagnosis of cancer or the 2nd or 3rd. Did you know Mark the man who used to build and maintain Grace back in the day also had 3 different cancers he lived through? You both must have a genetic mutation that drives that. Don, my husband is also still living life and probably has kicked his lung cancer. It's been almost 7 years since his last treatment and 10 years since his diagnosis. All the nasty spots in his lungs have stabilized and are probably scar tissue. I feel very lucky every day.

Keep us posted and I hope you're at the end of your new diagnoses.

Take care Nan,

Janine

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

Be a Part of the Patient Perspectives: Clinical Trials Storytelling Program - 2025-26

dbrock — Thu, 21 Aug 2025 19:03:37 +0000

Be a Part of the Patient Perspectives: Clinical Trials Storytelling Program - 2025-26 dbrock Thu, 08/21/2025 - 12:03

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Be a Part of the Patient Perspectives: Clinical Trials Storytelling Program - 2025-26

dbrock

Thu, 08/21/2025 - 12:03

Patient Perspectives: Clinical Trials Experiences - Storytelling Program - 2025-26

Author

Denise Brock

Clinical Trials Storytelling Application - Downloadable Document

Tell your story and help us help others!

GRACE Patient Perspectives: Clinical Trials Storytelling Program - 2025-26 - Overview

Apply online here

The goal of this Patient Perspectives program is to give a voice to those who have experience in participating in a clinical trial for a cancer diagnosis. By telling your story, you can educate others on the process, discuss your difficulties, and share your accomplishments. Your voice helps to educate and advocate for others who are in or who may be considering a clinical trial. This is a paid opportunity, and you will receive a stipend for your participation!

Storytelling will take the form of written, video, and/or audio/podcast to reach the largest audience. GRACE staff will coach and support participants on digital outreach and advocacy.

All people currently enrolled in, or with past enrollment in, a clinical trial for a cancer diagnosis are welcome and encouraged to apply. GRACE’s designated committee will review the nominees and select up to 3 applicants for participation in the 2025-26 program.

Who is GRACE?

The Global Resource for Advancing Cancer Education (GRACE, cancerGRACE.org) is a non-profit organization founded by leading Thoracic Oncologist, Dr. Howard (Jack) West, in 2007. GRACE’s mission is to provide expert-mediated information directly to people with a cancer diagnosis and their caregivers to empower them to become direct partners in their cancer treatment. We currently produce over 300 short videos each year, reaching our community in over 190 countries.

Benefits of Participation

Applicants selected for this year’s program will work closely with GRACE staff to develop new educational content and learn new communication skills through the storytelling process.
Participants will receive training on digitally distributed content, social media, and other platforms. Participants' work will be highlighted and shared by GRACE, our network of established leaders in the oncology community, and GRACE board members with an array of interests and connections.

Participants will receive a stipend, and training in communication and media platforms.

Expectations

Participants will work with GRACE to develop program formats and production, and will present a proposal based on their experience in a clinical trial program. Participants will be expected to attend (via ZOOM) regular meetings throughout the program year to learn and to discuss their ideas. A minimum of three (3) media productions per participant will be expected by the end of the program.

Ideal Candidate

People who are navigating a cancer diagnosis, who are currently or have been involved in a clinical trial, and who have a passion for helping others and telling their stories are ideal for this program.

Applicants should have a particular interest and passion for communications, sharing experiences, storytelling, and patient education. People looking for a way to give back to the cancer community, who exhibit strong written and oral communication skills coupled with a passion for sharing experiences to educate and advocate, will thrive in this program. GRACE will guide them through boosting their voice to advocate for themselves and others in the cancer community.

2025 is our fifth year for this program, and we are excited to continue to generate a platform for patient advocacy and sharing patient education in the area of clinical trials.

The application due date is October 5, 2025. Applicants will be contacted by October 25, 2025, with information regarding acceptance and the next steps.

To apply online, please click here, OR download the above-attached PDF form and email it to dbrock@cancerGRACE.org.

Any questions, please contact Denise Brock at dbrock@cancergrace.org or 888-501-1025 x2.

Video Language

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Hello Natalieaster, Welcome to Grace. I hope your stay with us is short, but we are always here to answer, listen and share.

Since your doctor didn't seem too worried...

Foro en Español Sobre Terapias Dirigidas para el Cáncer de Pulmón

2025 HPV Advances Patient Education Program-Sponsored by Merck

August 9, 2025, Foro de Pacientes sobre Terapias Dirigidas en Cáncer de Pulmón 2025 (Webinar en Vivo)

2024-2025 PEA Program Videos-Thank You Exelixis and Janssen for Your Sponsorship

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Hello.
I know this post is…

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2024 Case Based Panel Discussions

AlexandraGBeneke — Tue, 05 Aug 2025 22:07:34 +0000

2024 Case Based Panel Discussions AlexandraGBeneke Tue, 08/05/2025 - 15:07

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2024 Case Based Panel Discussions

AlexandraGBeneke

Tue, 08/05/2025 - 15:07

A panel of oncologists comes together to discuss hypothetical cases of lung cancer and how they would go about treating them.

Author

Alexandra Guandique-Beneke

In these videos, the panel discusses treatment options for a patient diagnosed with EGFR Exon 19 Deletion NSCLC and looks at data from the Laura Trial. They also discuss treatment options for a patient with a smoking history and diagnosis of small cell lung cancer, and how the Adriatic Study factors into decisions.

To watch the complete playlist, click here.

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Hello Natalieaster, Welcome to Grace. I hope your stay with us is short, but we are always here to answer, listen and share.

Since your doctor didn't seem too worried...

Foro en Español Sobre Terapias Dirigidas para el Cáncer de Pulmón

2025 HPV Advances Patient Education Program-Sponsored by Merck

August 9, 2025, Foro de Pacientes sobre Terapias Dirigidas en Cáncer de Pulmón 2025 (Webinar en Vivo)

2024-2025 PEA Program Videos-Thank You Exelixis and Janssen for Your Sponsorship

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another question about Tagrisso not working and alternatives

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The information you share is…

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Hi Mel, I'm sorry for the…

By JanineT GRACE … on Thu, 08/28/2025 - 11:26

Hello.
I know this post is…

By mel on Wed, 08/27/2025 - 08:20

Leading Developments in Lung Cancer - 2023

AlexandraGBeneke — Tue, 05 Aug 2025 21:30:14 +0000

Leading Developments in Lung Cancer - 2023 AlexandraGBeneke Tue, 08/05/2025 - 14:30

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Leading Developments in Lung Cancer - 2023

AlexandraGBeneke

Tue, 08/05/2025 - 14:30

Drs. West, Lovly, and Addeo review key information from 2023 ASCO on lung cancer developments, including the results of several trials.

Author

Alexandra Guandique-Beneke

For this year's post-ASCO Lung Cancer panel discussion, Drs. H.Jack West, Oncologist with City of Hope Comprehensive Cancer Center, and Founder and President of GRACE, Christine Lovly, Associate Professor of Medicine, Division of Hematology-Oncology, and Dr. Alfredo Addeo, Medical Oncologist, Department of Oncology at the University Hospital of Geneva (HUG), discuss the most current and emerging treatment information recently presented at ASCO.

To watch the complete playlist, click here.

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Hello Natalieaster, Welcome to Grace. I hope your stay with us is short, but we are always here to answer, listen and share.

Since your doctor didn't seem too worried...

Foro en Español Sobre Terapias Dirigidas para el Cáncer de Pulmón

2025 HPV Advances Patient Education Program-Sponsored by Merck

August 9, 2025, Foro de Pacientes sobre Terapias Dirigidas en Cáncer de Pulmón 2025 (Webinar en Vivo)

2024-2025 PEA Program Videos-Thank You Exelixis and Janssen for Your Sponsorship

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another question about Tagrisso not working and alternatives

Hello Natalieaster, Welcome…

By JanineT GRACE … on Mon, 09/22/2025 - 14:30

The information you share is…

By LibbieRohan on Sun, 09/21/2025 - 20:55

Hi Mel, I'm sorry for the…

By JanineT GRACE … on Thu, 08/28/2025 - 11:26

Hello.
I know this post is…

By mel on Wed, 08/27/2025 - 08:20

East Asian Lung Cancer Video Llibrary 2025

AlexandraGBeneke — Mon, 04 Aug 2025 18:08:45 +0000

East Asian Lung Cancer Video Llibrary 2025 AlexandraGBeneke Mon, 08/04/2025 - 11:08

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Cancer Journey

East Asian Lung Cancer Video Llibrary 2025

AlexandraGBeneke

Mon, 08/04/2025 - 11:08

As part of the 2025 East Asian Lung Cancer Video Library, Dr. Jeongmin Seo (Seoul National University Bundang Hospital) discusses perioperative treatment for resectable non-small cell lung cancer (NSCLC). Also, Dr. Jingyong Kim (Samsung Medical Center) discusses targeted therapy for non-small cell lung cancer patients with EGFR mutations.

Author

Alexandra Guandique-Beneke

2025 동아시아 폐암 이미지 라이브러리의 일환으로 서정민 박사(분당서울대학교병원)가 절제 가능한 비소세포 폐암의 수술 주변 관리에 대해 논의합니다.

2025 동아시아 폐암 영상 라이브러리의 일환으로, 김진용 박사(삼성메디컬센터)는 EGFR 돌연변이가 있는 비소세포 폐암 환자를 위한 표적 치료에 대해 논의합니다.

To watch the complete playlist click here.

Please feel free to offer comments and raise questions in our
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Hello Natalieaster, Welcome to Grace. I hope your stay with us is short, but we are always here to answer, listen and share.

Since your doctor didn't seem too worried...

Foro en Español Sobre Terapias Dirigidas para el Cáncer de Pulmón

2025 HPV Advances Patient Education Program-Sponsored by Merck

August 9, 2025, Foro de Pacientes sobre Terapias Dirigidas en Cáncer de Pulmón 2025 (Webinar en Vivo)

2024-2025 PEA Program Videos-Thank You Exelixis and Janssen for Your Sponsorship

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another question about Tagrisso not working and alternatives

Hello Natalieaster, Welcome…

By JanineT GRACE … on Mon, 09/22/2025 - 14:30

The information you share is…

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Hi Mel, I'm sorry for the…

By JanineT GRACE … on Thu, 08/28/2025 - 11:26

Hello.
I know this post is…

By mel on Wed, 08/27/2025 - 08:20

2025 Case Based Panel Discussions

AlexandraGBeneke — Mon, 04 Aug 2025 16:34:49 +0000

2025 Case Based Panel Discussions AlexandraGBeneke Mon, 08/04/2025 - 09:34

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Cancer Journey

2025 Case Based Panel Discussions

AlexandraGBeneke

Mon, 08/04/2025 - 09:34

A Panel of Leading Oncologists Examines Hypothetical Case Scenarios and Evidence-Based Treatment Strategies for 2025

Author

Alexandra Guandique-Beneke

For the 2025 Case Based Panel Discussions, a panel of oncologists consisting of Dr. Isabel Preeshagul, Dr. Deborah Doroshow and Dr. Christine Garcia gather to discuss key elements of 2 hypothetical patient case scenarios followed by a discussion of what the data suggests as an optimal treatment approach.

To watch the complete playlist click here.

Video Language

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Hello Natalieaster, Welcome to Grace. I hope your stay with us is short, but we are always here to answer, listen and share.

Since your doctor didn't seem too worried...

Foro en Español Sobre Terapias Dirigidas para el Cáncer de Pulmón

2025 HPV Advances Patient Education Program-Sponsored by Merck

August 9, 2025, Foro de Pacientes sobre Terapias Dirigidas en Cáncer de Pulmón 2025 (Webinar en Vivo)

2024-2025 PEA Program Videos-Thank You Exelixis and Janssen for Your Sponsorship

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another question about Tagrisso not working and alternatives

Hello Natalieaster, Welcome…

By JanineT GRACE … on Mon, 09/22/2025 - 14:30

The information you share is…

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Hi Mel, I'm sorry for the…

By JanineT GRACE … on Thu, 08/28/2025 - 11:26

Hello.
I know this post is…

By mel on Wed, 08/27/2025 - 08:20

2025 Foro de Pacientes de Terapias Dirigidas de Cancer de Pulmon

dbrock — Thu, 26 Jun 2025 20:46:19 +0000

2025 Foro de Pacientes de Terapias Dirigidas de Cancer de Pulmon dbrock Thu, 06/26/2025 - 13:46

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2025 Foro de Pacientes de Terapias Dirigidas de Cancer de Pulmon

dbrock

Thu, 06/26/2025 - 13:46

Inscripción e Información

Author

Denise Brock

Da click aquí para más información y para registrarte ahora

Este 9 de agosto, no te puedes perder nuestro Foro anual de pacientes de terapias dirigidas de cáncer pulmón de GRACE en ESPAÑOL. Es un evento educativo para pacientes en vivo, virtual e interactivo, que incluye presentaciones y mesas redondas que cubren una diversa gama de cánceres de pulmón y opciones de tratamiento.

Este evento educativo para pacientes, en directo, virtual e interactivo, incluye presentaciones y mesas redondas que cubren temas generales relevantes para una amplia gama de cánceres de pulmón y opciones de tratamiento, así como la oportunidad de hablar con los expertos en una sesión de preguntas y respuestas. Entre los ponentes se incluyen profesionales médicos de primera línea que presentarán debates centrados en el paciente para educar a las comunidades de pacientes y cuidadores.

El evento se llevará a cabo el sábado 9 de agosto del 2025, a las 8:00 a.m. hora del Pacífico y 11:00 a.m. hora del Este

¡Agenda completa e información sobre la facultad próximamente disponible!

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Spanish

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Hello Natalieaster, Welcome to Grace. I hope your stay with us is short, but we are always here to answer, listen and share.

Since your doctor didn't seem too worried...

Foro en Español Sobre Terapias Dirigidas para el Cáncer de Pulmón

2025 HPV Advances Patient Education Program-Sponsored by Merck

August 9, 2025, Foro de Pacientes sobre Terapias Dirigidas en Cáncer de Pulmón 2025 (Webinar en Vivo)

2024-2025 PEA Program Videos-Thank You Exelixis and Janssen for Your Sponsorship

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JOIN THE CONVERSATION

another question about Tagrisso not working and alternatives

Hello Natalieaster, Welcome…

By JanineT GRACE … on Mon, 09/22/2025 - 14:30

The information you share is…

By LibbieRohan on Sun, 09/21/2025 - 20:55

Hi Mel, I'm sorry for the…

By JanineT GRACE … on Thu, 08/28/2025 - 11:26

Hello.
I know this post is…

By mel on Wed, 08/27/2025 - 08:20

Lung Cancer OncTalk 2024

AlexandraGBeneke — Mon, 13 Jan 2025 19:41:06 +0000

Lung Cancer OncTalk 2024 AlexandraGBeneke Mon, 01/13/2025 - 11:41

Article and Video CATEGORIES

Cancer Journey

Lung Cancer OncTalk 2024

AlexandraGBeneke

Mon, 01/13/2025 - 11:41

The 2024 Lung Cancer OncTalk was a live, virtual, interactive patient education event presented in December 2024 and led by Dr. Ibiayi Dagogo-Jack. It included presentations and panel discussions covering general subjects relevant to lung cancer and treatment options and an opportunity to speak with the experts in a Q&A session. Speakers included top medical professionals presenting patient-focused discussions to educate the patient and caregiver communities to become advocates for their own health and well-being.

Author

Ibiayi Dagogo-Jack, MD, Guest Faculty

The 2024 Lung Cancer OncTalk was a live, virtual, interactive patient education event presented in December 2024, moderated by Dr. Ibiayi Dagogo-Jack, Assistant Professor of Medicine at Harvard Medical School and a Medical Oncologist at Massachusetts General Hospital, and joined by speakers: Dr. Misty Shields, Indiana University School of Medicine, Dr. Alissa Cooper, Memorial Sloan Kettering Cancer Center, Dr. Angel Qin, University of Michigan Rogel Cancer Center, and Dr. Julia Rotow, Harvard Medical School.

Topics include:

- Small Cell Lung Cancer

- Antibody Drug Conjugates (ADCs)

- Combo Therapies for EGFR

- Targeted Therapies in Non-Metastatic Lung Cancer

To watch the complete playlist, click here.

To download video transcripts click here.

A huge thank you to our sponsors! #astrazeneca #daiichisankyo #regeneron #takedaoncology

Video Language

Please feel free to offer comments and raise questions in our
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Hello Natalieaster, Welcome to Grace. I hope your stay with us is short, but we are always here to answer, listen and share.

Since your doctor didn't seem too worried...

Foro en Español Sobre Terapias Dirigidas para el Cáncer de Pulmón

2025 HPV Advances Patient Education Program-Sponsored by Merck

August 9, 2025, Foro de Pacientes sobre Terapias Dirigidas en Cáncer de Pulmón 2025 (Webinar en Vivo)

2024-2025 PEA Program Videos-Thank You Exelixis and Janssen for Your Sponsorship

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another question about Tagrisso not working and alternatives

Hello Natalieaster, Welcome…

By JanineT GRACE … on Mon, 09/22/2025 - 14:30

The information you share is…

By LibbieRohan on Sun, 09/21/2025 - 20:55

Hi Mel, I'm sorry for the…

By JanineT GRACE … on Thu, 08/28/2025 - 11:26