🔬 Research. Empowerment. Advocacy. Patients & families improving #LCSM outcomes via education, support & cutting-edge research

London, England
Oncogene Cancer Research retweeted
📣 #ESMO26 | HER-LUNG UK Proud to present our research on the experiences and unmet needs of younger women with lung cancer in 🇬🇧 Building on these findings, HER-ALERT aims to improve earlier recognition of lung cancer in younger women who have never smoked. Grateful to the @Roy_Castle_Lung for funding HER-LUNG UK and supporting this important research. Thanks to co-investigators @Yvonne_Diaz_ @NarjustFlorezMD Dr Florien Boele and @KathrynBanfill Dr Gordon and all the patients and caregivers who partecipated #ESMO26 #HERLUNG #HERALERT #LungCancer #HYMS @HullYorkMed @myESMO
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Oncogene Cancer Research retweeted
"You have stage 4 cancer and you're playing tennis?" I get some version of this a lot. People expect me to be stuck in bed. So here's why I don't look like what most people picture. Stage 4 means the cancer has spread beyond where it started. It doesn't tell you how much it's spread or how sick someone is. Some people are stage 4 with cancer in multiple organs that kills their appetite and wears them down. Mine isn't like that. A lot of "the cancer look" actually comes from chemo: - It attacks fast-dividing cells, cancer and healthy ones alike - That includes hair, so the hair falls out - And the GI tract, which leads to nutrition problems, weight loss and looking rough I'm not on chemo (that's next in line once my current meds stop being effective). My cancer is ALK+, and I take one targeted pill a day, lorlatinib, that keeps it in check. It's also very good at keeping the cancer out of the brain, which is common with lung cancer. My first drug, alectinib, worked for 18 months but wiped me out. I'd sleep 8-9 hours and feel like I got 3. Naps were mandatory. Lorlatinib made the fatigue almost completely go away. And I went from 8 pills a day to 1, no food required. Bonus! What you can't see: I have daily pain, but it's from the radiation that treated the cancer, not the cancer itself. The rest isn't a secret. Eat well, train, sleep, take a few basic supplements (@bryan_johnson's Blueprint). I still lift, play tennis, and play baseball. Here's me this summer playing 1860s-rules baseball, costume and all. Great hit. Terrible exit. Stage 4 looks different than you think.
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Oncogene Cancer Research retweeted
Finding support shouldn’t mean hours of searching. Our curated resource directory brings together financial assistance, treatment information and support for people affected by lung cancer. ylci.org/resource-directory/
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Oncogene Cancer Research retweeted
Don’t miss this joint ALKtALK from @ALKPositiveinc and @EGFRResisters with Dr @kyleconcannonMD (aka @Cracking_Cancer). Today, Sunday 18 Oct at 7pm ET. 🔗 alkpositive.org/living-with-…
🧬 Could CAR T-cell therapy offer a new way to treat lung cancer? Join ALK Positive & EGFR Resisters tomorrow, Oct. 18, at 7 PM ET for a special ALKtALK with Dr. Kyle Concannon exploring ACES CAR T-cell research and its potential for ALK, EGFR & other lung cancers.
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Oncogene Cancer Research retweeted
My @grok @bot found a clinical trial for my stage 4 lung cancer an hour from my house. I never would have known about it on my own. I'd been interested in a trial for a new ALK drug called TRI-611, but not if it meant flying across the country over and over. In September the trial added the University of Cincinnati as a site, and my bot caught the change. It also flagged an eligibility question for me to take to my oncologist. Before this I was passive. Maybe I'd stumble on something on X, maybe my oncologist would mention something (he hasn't), and my ALK+ patient group on Facebook was probably the most reliable source. Nothing was guaranteed, and I definitely wasn't hearing about trials adding new locations. Now it checks for me every morning, and I'm tracking more than 25 options, from personalized vaccines to next-gen ALK drugs, sorted by how relevant they are to me and when they'd make sense. The whole game is curation...the more it knows about your diagnosis, the more it finds signal instead of noise. 1. Teach it your diagnosis. Mine knows my cancer type, stage, every treatment I've had, my biomarkers, and how far I'm willing to travel. Trials include or exclude people based on exactly these things. 2. Tell it what to do. Mine checks clinical trial listings, FDA decisions, conference abstracts and company news, compares it all against the day before, and only pings me when something new and sourced shows up. 3. Review what it finds. I read the source, then run it past Grok, which both know my history, to decide whether it's useful and when. Then it goes into my tracker in Notion (below). More on that part in another post soon. It gives me hope, too. Even when I'm not eligible, seeing new companies form and new trials open every week reminds me how fast this field is moving. I turned my setup into a template so any patient or caregiver can build their own. It asks about the diagnosis, travel limits, and where to keep results, then builds the watch around the answers: x.ai/bot Thank you @SpaceXSI @elonmusk for building this.
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Oncogene Cancer Research retweeted
Stopped by #JADPROLive2026 to discuss evolving role of surgery in stage IV lung cancer and the importance of multidisciplinary care! Grateful for oncology advanced practitioners, whose expertise across medical, radiation, and surgical oncology is invaluable to our patients!
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Oncogene Cancer Research retweeted
🧬 Could CAR T-cell therapy offer a new way to treat lung cancer? Join ALK Positive & EGFR Resisters tomorrow, Oct. 18, at 7 PM ET for a special ALKtALK with Dr. Kyle Concannon exploring ACES CAR T-cell research and its potential for ALK, EGFR & other lung cancers.
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Oncogene Cancer Research retweeted
Pope Leo XIV's doctors announced on Saturday morning that Pope Leo XIV is fit to be discharged from Gemelli Hospital. In a statement from the Holy See Press Office, Dr. Luigi Carbone and Professor Stefano Margaritora said the Pope underwent blood tests and a chest X-ray in the morning, which confirm that his clinical condition allows for him to leave hospital. The Holy See Press Office said he will return to the Vatican on Saturday afternoon and pray the Angelus on Sunday from the window of the papal apartment.
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13.1 miles for her sister, Amy. £1,200 raised for research. 🩵 Gemma completed the Bournemouth Half Marathon, smashing her £500 target. Amy was diagnosed with stage 4 ALK+ lung cancer at just 20. Thank you, Gemma! 👏 More info at: kindlink.com/fundraising/Onc…
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At diagnosis, it can be hard to imagine another year. Let alone 4, 8 or 10. Six people living years after stage 4 #lungcancer share their words of hope. Not everyone gets this time yet. Research matters. Help us, @YoungLungCancer & @EGFRResisters share our monthly dose of hope.
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Takeda’s miss on its Phase 3 #mobocertinib trial scuttled the underlying accelerated approval of mobo in October 2023, and that has not been good for #EGFR exon 20 patients. Understatement of the year. Kudos to @TakedaOncology for handling that body blow with such class and integrity and continuing on with compassionate use (where the drug supply ended on September 30, 2026), but the loss of mobo as a single agent where we had seen multi-year PFS in some patients is something we’d like @fdaoncology to never revisit on other companies. (ArriVent has different regulatory issues.) Mobo could have been extending patient lives post-#ami plus chemo progression for the past 2.5 years which featured the unfortunate ODAC vote against #poziotinib; the self-immolation of BLU-451 at Blueprint; and the bizarre 16 month absence of sunvozertinib squandering sunvo’s July 2025 FDA approval. Plus, if mobo had not been jettisoned from the pipeline, it could have been an immediately available second-line option for patients who could not get into maxed-out clinical trials or trials that excluded pretreated TKI patients (and who may well have chosen mobo before Dato). Reminder to all that China’s NMPA approved Allist’s furmonertinib years ago for the EGFR classicals and most recently for #EGFR #exon20. If sunvo can arrive by the end of October and if zipalertinib can get approved by late February 2027, we will be in better shape for our post-ami + chemo progressors.
FURVENT missed. Control arm PFS 7.1m by investigators 9.5m by BICR. Still PACC mutation both in stage 4 (ALPACCA) and in adjuvant (FIRMOST). Can a drug be approved globally if it failed in stage 4 but succeeded in stage IB-IIIB? @Exon20Group @EGFRResisters @EgfrUk @EGFRmNSCLC
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Oncogene Cancer Research retweeted
📣 It’s a Patient Advocate Takeover! Dr. Sydney Barned and @Yvonne_Diaz_ share what caught their attention at #WCLC26, from access to new therapies and clinical trial design to survivorship and more. Tune in: bit.ly/3TA4gv3 #PatientAdvocacy #LungCancer #LungCancerConsidered @OncogeneCancer @ALKPositiveinc
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Oncogene Cancer Research retweeted
Our October Newsletter is out! —> mailchi.mp/28adea51bc3c/exci…
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What does progress in #lungcancer mean for everyday life? Why do patient voices matter in research? Our Chair & @ALKPositiveinc BoD @Yvonne_Diaz_ & @DrYolaOLO discuss this & more from #WCLC26 in a takeover of @IASLC’s Lung Cancer Considered podcast. 🎧 bit.ly/3TA4gv3
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Oncogene Cancer Research retweeted
In #MARIPOSA, amivantamab-lazertinib significantly improved overall survival vs osimertinib. Hayashi et al. found that amivantamab-lazertinib reduces common resistance mechanisms vs osimertinib, suggesting that this regimen is changing the underlying biology of EGFR-mutant disease, contributing to both first- and second-line long-term efficacy outcomes. Read more here: bit.ly/4z4iFi3 #Amivantamab #Lazertinib #LungCancerResearch
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Oncogene Cancer Research retweeted
Countdown to #ESMO26 DeLLphi-305: ES-SCLC ⏰ Saturday Presidential Session 1 💉 1L maintenance Tarlatamab + Durvalumab 🚨 We know from Press Release that this is positive for ORR, PFS & OS 🤔 Likely to be (one) of the standards of care where funded ❓Where do B7-H3 ADCs fit in ❓Would 1L ADC & immunotherapy, then Tarlatamab 2L be better ❓Or will DeLLphi-305 show Tarlatamab in 1L maintenance is best place for it 🧐 Much to consider
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Four sisters. Always close. Amy was just 20 when she was diagnosed with stage 4 ALK+ #lungcancer. On 11 October, her sister Gemma runs the Bournemouth Half Marathon to fund research—and hope for more time together. 🩵 Support Gemma: kindlink.com/fundraising/Onc… #LCSM
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Oncogene Cancer Research retweeted
Proud of Dr. Ido Haimi presenting our work at @AATSHQ #ITSOS2026! Beyond local control, lung resection informed changes in care for nearly 1 in 4 patients with metastatic NSCLC in our cohort. Surgery provides tissue that can guide what comes next.
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Oncogene Cancer Research retweeted
Never did I think I’d have a cocktail named after me… but here we are! 🍸 Introducing the Flo-Tini: a refreshing mix of cucumber, mint, and Prosecco, and officially one of the most fun surprises of the night! Cheers to moments you never see coming!
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