iiinova — where your digital self keeps evolving

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Oncogene Cancer Research @oncogenecancer.bsky.social · 04/10/2026

Four sisters. Always close. Amy was just 20 when she was diagnosed with stage 4 ALK+ lung cancer. On 11 October, her sister Gemma runs the Bournemouth Half Marathon to fund research—and hope for more time together. 🩵 Support Gemma: www.kindlink.com/fundraising/... #LungCancer #lcsm

Photo shows a young woman with a running vest running towards dusk with a river in the background and bridge with his lit up with beautiful lights. She’s holding a drink bottle. The text says 13.1 miles. For her sister, Amy. Gemma’s reason

Photos shows a picture of Gemma, wearing a running bust which holds a drink bottle and she’s fastening a pocket. Her baseball cap is Blue and says Oncogene cancer research. The card says my younger sister’s cancer’s diagnosis is turned our world up

Photo of Gemma wearing her runners cap and running best in a field with a road in the distance. The text says for Amy. For research. Bournemouth Muth half marathon, 11 October 2026. Helped Gemma make every mile count.

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Oncogene Cancer Research @oncogenecancer.bsky.social · 12/07/2026

£10,000 raised for #lungcancer research. ⛳ Thanks to every player, sponsor, supporter & co-founder @janclark1.bsky.social who made our Golf Day at Tall Pines Golf Clubin Bristol possible. Every pound funds life-saving research. This is what community looks like. #LCSM

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Oncogene Cancer Research @oncogenecancer.bsky.social · 23/06/2026

We’re now on Substack. We exist because too many people affected by #lungcancer are still given too little — too little time, clarity & support. We’re working to accelerate research, empower patients & help research reach patients faster. 👇 oncogenecancerresearch.substack.com/p/welcome-to...

Card promoting that we are now on Substack.

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Oncogene Cancer Research @oncogenecancer.bsky.social · 26/04/2026

There is something powerful about the @londonmarathon.bsky.social The theme music makes us nostalgic, the costumes make us smile and the stories make us emotional. Especially gratetul to Mandy supporting our continued work at @icr.ac.uk Read more👇 oncogeneresearch.org/icr-festival-t… #LCSM

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Oncogene Cancer Research @oncogenecancer.bsky.social · 13/04/2026

Stage 4 oncogene-driven #lungcancer isn’t one-size-fits-all. Targeted therapies can control disease for years, but progression is inevitable. Guidance (STS and ESMO) supports LCT in selected cases. Why not discuss it more? A patient perspective 👇 bmjoncology.bmj.com/content/bmjo... @bmj.com

Don't rule out surgery in stage 4 lung cancer. Published in BMJ Oncology - a patient and advocacy perspective for clinical consideration. Card includes photos of the five authors.

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Oncogene Cancer Research @oncogenecancer.bsky.social · 28/02/2026

Progress in #lungcancer doesn’t only happen in clinics or labs. Why not use your skills to accelerate patient-focused outcomes? We’re seeking volunteers w expertise in finance, legal, marketing, data, digital, project management & research. Interested? www.oncogeneresearch.org/volunteer

Photo of two young people looking at a laptop. Text says call for volunteers.

Text says turn your skills into progress.

Two young women photographed with words research cannot wait.

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The Lancet @thelancet.com · 23/01/2026

Can small changes in physical activity make a major difference? On the cover, a meta-analysis suggests that 5 extra minutes of moderate physical activity a day is associated with a reduction of up to 6% of all deaths in the least active adults. Read this & more 👉 spkl.io/63326AUxjE

Cover of The Lancet's Jan 24, 2026 issue. Quote on cover reads: "Small and realistic increases in [physical activity] of 5 min/day might prevent up to 6% of all deaths."

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Oncogene Cancer Research @oncogenecancer.bsky.social · 21/01/2026

We’re proud to share our first Annual Report. In our 1st year, we focused on helping our community live longer & better lives, through empowerment, advocacy & research. Thank you for walking alongside us. This is just the beginning. 👉 oncogeneresearch.org/annual-report #LCSM

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Oncogene Cancer Research @oncogenecancer.bsky.social · 03/01/2026

Months for some. Years for others. More than one doctor. More than one misdiagnosis. Delayed #lungcancer diagnosis is not rare, especially when you are young & do not fit the “profile”. Help us change the narrative. Help us create more awareness. #LCSM

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ALK Positive Inc. @alkpositive.bsky.social · 28/11/2025

This season, the greatest gift is time with loved ones. For people with ALK+ lung cancer—like Dana, Laura, Jordan, Jennifer & Craig—more research means more milestones, more everyday joys, more life. Every moment counts. Donate today

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Oncogene Cancer Research @oncogenecancer.bsky.social · 28/11/2025

#Biomarkertesting helps people with #lungcancer get the right treatment at the right time. Yet too many still miss out. This video created w @thermofishersci.bsky.social is a great resource for anyone diagnosed. Help share to empower & inform more people👇 www.oncogeneresearch.org/biomarker-te...

The image shows a drawing of two women - one a journalist called Sofia and a doctor known as Dr Ana. It says: Biomarker Testing: Watch this new education video. It's all you need to know about lung cancer and biomarker testing. Produced by Thermo Fisher with support from Oncogene Cancer Research.

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Princess Vimentin PhD | Cancer Biologist @princess-vimentin.bsky.social · 23/11/2025

How exciting! CRISPR reversed chemotherapy resistance in lung cancer, making tumors more responsive to chemotherapy. Eventually this tool can be applied to other types of cancers. CRISPR has so many applications. 🧪 www.sciencedaily.com/releases/202...

sciencedaily.com

CRISPR unlocks a new way to defeat resistant lung cancer

Scientists used CRISPR to disable the NRF2 gene, restoring chemotherapy sensitivity in lung cancer cells and slowing tumor growth. The technique worked even when only a fraction of tumor cells were ed...

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Oncogene Cancer Research @oncogenecancer.bsky.social · 24/11/2025

Hope is the heart of research for people with #lungcancer. It's why Dr Jessica Lin @massgeneralbrigham.bsky.social says, progress happens when we all come together to push the boundaries of what’s possible. Let's keep working together to keep hope & progress alive. #StoriesOfLungCancer #LCAM25

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Yvonne Diaz @yvonnediaz.bsky.social · 24/11/2025

No two lung cancers are the same. We may each have lung cancer and be facing the same storm, but we each experience different waves, have different tools, unique experiences. There are many paths. Together we bring more light and hope.

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Duncan Edmonstone @edmonstone.net · 26/10/2025

I was honoured to spend a few hours recently talking with @yvonnediaz.bsky.social from @oncogenecancer.bsky.social about my lung cancer experiences. This first part is about my initial diagnosis and the start of my treatment. More to come shortly! youtu.be/FZsbfkloPyM?...

youtu.be

Duncan was 49, healthy. One day he had a seizure after work. It was stage 4 lung #cancer | #podcast

YouTube video by Oncogene Cancer Research

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Yvonne Diaz @yvonnediaz.bsky.social · 18/10/2025

This morning’s DeLLphi presentation @myesmo.bsky.social brings so much hope to our #lungcancer community. Love seeing fresh hope for those with small cell lung cancer. #ESMO25

Image of presenter Dr Martin Werner at ESMO presenting data on climate he delllphi study.

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Oncogene Cancer Research @oncogenecancer.bsky.social · 16/09/2025

Cancer #cachexia is an urgent but under-recognised challenge in lung cancer. At @LUNGevity’s #ILCSC25, @yvonnediaz.bsky.social will join Dr Richard Dunne to highlight hope underway from @cancergrand.bsky.social Team CANCAN. Sign up 👇 reg.eventmobi.com/ilcsc2025/regi… #LCSM

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ALK Positive Inc. @alkpositive.bsky.social · 16/09/2025

🌍 The 2025 ALK+ Summit brought together our community from 30 countries — united in one mission: accelerating research and supporting ALK-positive lives. 💙 Together, we are stronger. 👉 Stay connected for ALK Summit 2026: mailchi.mp/alkpositive/... #ALKPositive #StrongerTogether

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Yvonne Diaz @yvonnediaz.bsky.social · 16/09/2025

Lung cancer is increasingly being diagnosed in younger, fit women with no smoking history - like Sarah & Becca. As Drs Cecilia Pompili & Alex Georgiou say, we need greater awareness, & more research so that women are seen, heard, and diagnosed sooner. theguardian.com/society/2025/s… #lcsm

Photo of a lung cancer patient called Sarah who was diagnosed with lung cancer at age 40

A photo of Sarah holding up the guardian newspaper which features an article of her being diagnosed with lung cancer despite never having smoked and being young and a marathon

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ALK Positive Inc. @alkpositive.bsky.social · 10/09/2025

Congratulations to friends at Nuvalent on the exciting and pivotal #ARROS1 data released @iaslc.bsky.social #WCLC25. Proud to continue to collaborate on outcomes for our patient community globally. 💙 #LCSM

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D. Ross Camidge @drcamidge.bsky.social · 08/09/2025

After three years I feel ready to enter a new phase of patient empowerment by publicly disclosing my own disgnosis. This went live today and all good. news.cuanschutz.edu/cancer-cente...

news.cuanschutz.edu

World Lung Cancer Expert Diagnosed with Advanced Lung Cancer

D. Ross Camidge, MD, PhD, has spent his career fighting lung cancer. In 2022, that fight turned personal when he received a diagnosis of his own.

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Oncogene Cancer Research @oncogenecancer.bsky.social · 05/09/2025

Our cofounder @janclark1.bsky.social & her daughter Amy shared their story on BBC Radio highlighting why more research is vital & how our first Charity Ball on 1 Nov will raise funds for this vastly underfunded cancer. Check it out👇📷 static1.squarespace.com/static/65ca0... #LCSM

Photos of Jan Clark, our co-founder, with her daughter Amy who was diagnosed at age 20 which stage four lung cancer. They’re standing next to BBC radio presenter. John Darvall

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Oncogene Cancer Research @oncogenecancer.bsky.social · 14/08/2025

Surgery isn’t usually offered for stage 4 #lungcancer. Steve, diagnosed w stage 4 ALK+ in 2020, believed it could help prevent resistance. After targeted therapy shrank his tumour, he fought for surgery & got it. Read his story + our patient info: oncogeneresearch.org/surgery #LCSM

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ALK Positive Inc. @alkpositive.bsky.social · 21/07/2025

✨ What a weekend!✨ Our 2025 ALK+ Summit wrapped up today — but the connections, knowledge & hope keep going strong. Thank you for showing up & reminding us we’re #StrongerTogether. Stay tuned for more moments from this unforgettable weekend! 💙 #ALKSummit25 #LCSM

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Yvonne Diaz @yvonnediaz.bsky.social · 16/07/2025

The ALK+ Summit is truly one of the most anticipated events for our ALK cancer community. Not everyone can travel to San Diego to join, but worth watching online. We will also post all videos after the event too. Registration link below 👇

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Oncogene Cancer Research @oncogenecancer.bsky.social · 09/07/2025

We’re proud to donate £10,425 to @icr.ac.uk to advance oncogene-driven lung cancer research, supporting the vital work of Dr Paul Huang. This is just the start — stay tuned for more big research plans. 💙🔬 oncogeneresearch.org/icr-donation #LCSM

Screen grab of our co-founders Yvonne Diaz and Jan Clark with the OCR’s Dr Paul Huang.

We’re thrilled to announce a £10,425 donation to the Institute of Cancer Research (ICR) to support vital work into oncogene-driven lung cancers, including research led by Dr Paul Huang’s team.

This donation builds on the £90,000+ already contributed by our co-founders and community to help establish a cross-biomarker biobank and support world-class research at ICR.

A huge thank you to our incredible marathoners —
🏃‍♀️ Christina Roberts
🏃‍♀️ Ruth Price
🏃‍♀️ Aude-Aline Eugene —
for going the distance and raising these essential funds. You’ve inspired us all.

And this is just the beginning. Stay tuned — we’ve got more big plans to support research on the way. 🔬💙

#OncogeneCancerResearch #ICR #LungCancerAwareness #PatientLedResearch #BiomarkerDriven #MarathonForResearch #ThankYou

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ALK Positive Inc. @alkpositive.bsky.social · 16/06/2025

Amy, Seth, Amanda & Nancy are powered by faith, family & the fight for more research. This #ALKPositive Awareness Month, they’re taking action to raise $500K for lifesaving breakthroughs. Join the #PoweredByPatients movement 👉 secure.qgiv.com/event/alkpos... #APAM

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ALK Positive Inc. @alkpositive.bsky.social · 12/06/2025

🎥 Missed our #APAM kickoff ALKtALK? Dr. Jesse Boehm shares how @break_cancer is advancing bold ALK+ research & how we’re helping fund it. We’re raising $500K to continue to project the work at BTC & others like it. 🔗 Watch now youtu.be/GxrUsGIAFUs #PoweredByPatients #lcsm

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Oncogene Cancer Research @oncogenecancer.bsky.social · 05/06/2025

📢 Help us understand the emotional toll of #lungcancer. With @lungcancereurope.bsky.social & 46 orgs, we’re surveying patients & caregivers across Europe to explore the mental health impact of a diagnosis. 🧠 Your voice can shape better support. 🔗 surveymonkey.com/r/LuCESurvey20… #LCSM

💬 Help us understand the emotional toll of lung cancer.
Have you or a loved one been impacted by lung cancer?
We’re running a survey across Europe to explore the psychological impact of a lung cancer diagnosis—on both patients and caregivers.
🧠 We want to hear directly from you.
What’s been hardest to cope with?
What support (if any) have you received?
What’s missing?
📢 Your voice matters. By sharing your experience, you can help improve mental health services for others affected by this disease.
👉 Open to people diagnosed with lung cancer and their caregivers (excluding healthcare professionals) living in Europe.
Take the survey here

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Yvonne Diaz @yvonnediaz.bsky.social · 18/05/2025

Promising signals from the ALEK-B ph 2 trial: combining alectinib w bevacizumab achieved 97.1% 12-mo PFS & median PFS of 39.6 months in ALK+ #NSCLC. Intracranial control also notably strong. Could this combo help overcome resistance in more aggressive ALK variants? #research #lungcancer

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Oncogene Cancer Research @oncogenecancer.bsky.social · 15/05/2025

Understanding cultural norms in cancer care is key. Aurora Lucas, an advocate living w EGFR #lungcancer, shares how she went from staying silent—out of fear of being disrespectful — to speaking up in this editorial with Dr @lungoncdoc.bsky.social. 👇 openworks.mdanderson.org/aceqi/vol1/i... #LCSM

Summary of an article:

This editorial emphasizes that patient education is a vital, not optional, part of lung cancer care. It argues that when patients are equipped with clear, culturally responsive, and accessible information, they are better prepared to engage in their treatment, make informed decisions, and adhere to care plans.

Key insights include:

Understanding the disease: Lung cancer is complex, and patients benefit from education tailored to different learning styles—visual aids, plain language, and culturally sensitive approaches are critical.

Shared decision-making: Empowering patients to speak up and collaborate with providers leads to better care alignment with personal values, especially when patients overcome cultural norms that may discourage questioning authority.

Treatment adherence: Clear explanations, ongoing support, and access to peer-driven resources like social media groups and journals improve patients’ ability to follow through with treatments and manage side effects.

Collaborative education: Interdisciplinary teams—including oncologists, nurses, pharmacists, social workers, and patient advocates—enhance the education process. Technology, like apps and videos, makes information more accessible and engaging.

Family involvement & cultural nuance: In many communities, decision-making is collective. Patient education must account for family involvement and be adaptable to cultural norms.

Measuring impact: While anecdotal benefits are strong, more structured research is needed to measure the effectiveness of educational interventions and guide best practices.

Conclusion:
Patient education must be embedded into cancer care, supported by trained teams and infrastructure. As one patient co-author highlights, being informed and empowered transforms the experience from passive care to active partnership.

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Yvonne Diaz @yvonnediaz.bsky.social · 06/05/2025

Dr @narjustflorezmd.bsky.social doesn’t shy away from tough, taboo topics. @lungevity.bsky.social #HopeSummit, she led a powerful convo on how cancer affects identity, relationships, intimacy & sexual health. Her message: you deserve care, pleasure & to feel whole. Great party favours #LCSM

Five female lung Cancer Patient Advocates with leading thoracic oncologist, Dr Narjust Florez

Photo of Yvonne Diaz, lung Cancer Patient Advocate with leading thoracic oncologist, Dr Narjust Florez

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Oncogene Cancer Research @oncogenecancer.bsky.social · 21/04/2025

Sadly cancer knows no bounds & is common around the world. That’s why Christina, Ruth & Aude, from US, Mexico & France, will take on the @londonmarathon.bsky.social next Sunday. All funds raised will support @icr.ac.uk’s life-saving research. Let’s cheer them on 👇 #lcsm #LondonMarathon2025

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Yvonne Diaz @yvonnediaz.bsky.social · 13/04/2025

Learned loads @lungcancereurope.bsky.social AGM, like: My behaviour style is different in advocacy from my employed work. Cannot crochet. “Chemo brain” is real & applies to cancer generally. Much more. Grateful for the unexpected LuCE Patient Advocate Award. Thank you LuCE family for all.

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Hidehito HORINOUCHI @hhorinouchi.bsky.social · 29/03/2025

⏰NOW OUT‼️#ELCC25 🔥COCOON🦋: Preventing Moderate to Severe Dermatologic Adverse Events in 1st-line EGFR-mutant Advanced NSCLC Treated with Amivantamab + Lazertinib 🎙️ Dr. Nicolas Girard 🎯AEs ≥G2: OR 0.19 (95%CI, 0.09–0.40) ✅NCT06120140 #LCSM @oncoalert.bsky.social @myesmo.bsky.social @iaslc.bsky.social

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Narjust Florez, MD, FASCO @narjustflorezmd.bsky.social · 09/04/2025

Our EQUAL study is open for enrollment! More in this video! @florezlab.bsky.social @latinasinmed.bsky.social

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ALK Positive Inc. @alkpositive.bsky.social · 09/04/2025

💬 “Palliative care isn’t about giving up—it’s about living well, longer.” Missed our latest #ALKtalk with Dr. @lpetrillz? Catch the replay to learn how palliative care supports quality of life from day one. 🎥 Watch now: youtu.be/lz_uKKItkWc

youtu.be

The vital role of palliative care in ALK-positive #cancer

YouTube video by ALK Positive Inc.

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Oncogene Cancer Research @oncogenecancer.bsky.social · 09/04/2025

Exciting to see the opening of the EQUAL study to see if we can diagnose EGFR & hopefully later other oncogene lung cancers earlier. We often don’t meet screening criteria & know that early detection saves lives. Find out more 👇 #lcsm

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Yvonne Diaz @yvonnediaz.bsky.social · 06/04/2025

Telling people you have cancer is one of the worst parts. It makes it real in those early days when you are only coming to terms yourself. Probably telling the kids is the worst convo of all. Appreciate this conversation w/ @younglungcancer.bsky.social as part of @oncogenecancer.bsky.social #LCSM

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Oncogene Cancer Research @oncogenecancer.bsky.social · 06/04/2025

We are looking forward to participating in the @lungcancereurope.bsky.social AGM & meeting next week in Berlin. By working together across patient organisations we can achieve outcomes for our lung cancer community faster. We are #StrongerTogether. #LCSM

Image of Oncogene Cancer Research’s cofounder Yvonne Diaz with a quote stating the need to collaborate among patient organisations to improve lung cancer outcomes

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Florez Lab @florezlab.bsky.social · 03/04/2025

Check out our friends @oncogenecancer.bsky.social on their new Youtube account! Keeping it tech savvy! youtube.com/@oncogenecan...

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Oncogene Cancer Research @oncogenecancer.bsky.social · 30/03/2025

Happy Mother's Day to all the incredible mothers and mother figures across the UK. May research and science bring each of us the great gift: more time. Thinking of those missing their mums, those longing to be mothers & those facing complicated relationships today. #MothersDay #cancer #LCSM

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ALK Positive Inc. @alkpositive.bsky.social · 26/03/2025

Patient voices make a difference in all areas of our care —including the use of AI & wearables to advance research. 👀 this talk w @yvonnediaz.bsky.social our Board Member & co-founder of @oncogenecancer.bsky.social from the UpSmart conference in Manchester 👇 youtube.com/watch?v=5YwAnC… #LCSM

Photo of Yvonne Diaz, patient, Patient Advocate and co-founder of Oncogene Cancer Research and ALK Positive board member

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Jeffrey Townsend @jeffreytownsend.bsky.social · 23/03/2025

@alkpositiveuk.bsky.social—ALK resistance mutations show greater APOBEC attribution than e.g. EGFR mutations. Therefore, patients with ALK+ tumors would benefit more from therapies suppressing APOBEC activity 🧪. www.sciencedirect.com/science/arti...

Mutational signature weights (potential mutational processes) underlying TKI resistance-associated gene variants in non-small-cell lung cancer patient samples, sorted by descending attribution to A3A/A3B processes.

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Yvonne Diaz @yvonnediaz.bsky.social · 16/03/2025

We patients often wonder why each of us responds so individually to our targeted therapies. It’s heartbreaking when you see up close how not all derive the same benefit from the exact same drug w seemingly the same disease. Important to understand what factor influence this & do something about it.

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Oncogene Cancer Research @oncogenecancer.bsky.social · 15/03/2025

At @cancergrace.bsky.social Patient Forum, Dr @lungoncdoc.bsky.social reveals that oncologists also get “scanxiety.” Will the latest scan mean their patient needs to move treatment. Touching to hear we share the same concerns 🩵 #lcsm #lungcancer

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ALK Positive Inc. @alkpositive.bsky.social · 15/03/2025

Great summary from Dr Christine Bestvina at @cancergrace.bsky.social Patient Forum on the CROWN & NVL-655 data. Research is extending our lives and enabling a good life too. We will keep pushing for more research until we have cures #LCSM #lungcancer

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