alkpositiveuk.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

Today is #RareDiseaseDay. 💙 3.5M in the UK live with a rare disease like ALK+ #lungcancer. 1 in 17 will develop a rare disease—yet few have a cure. Many face years of misdiagnosis, limited treatment, & financial strain. Rare doesn’t mean invisible—we fight harder to be seen. #ShowYourStripes #LCSM

submitted 14 hours ago • 1 comment

1 in 17 will develop a rare disease—yet many face it alone. ALK+ #lungcancer is rare, with little awareness, limited funding, & a constant fight for support. Many charities driving progress are small & stretched thin. Rare disease charities are lifelines. But what happens when they’re gone? #LCSM

submitted 1 day ago • 0 comments

ALK+ UK is off to @btog.bsky.social next week - a key event in #lungcancer - Debra Montague (Chair) & Geoff Otterman (Treasurer) are attending. We’re delighted to have 2 abstracts accepted for presentation. Looking forward to learning, connecting, & sharing patient perspectives. #BTOG25 #LCSM

submitted 2 days ago • 1 comment

The University of Sheffield, supported by the Ruth Strauss Foundation, is running an anonymous 30 min survey for people in the UK with non-smoking #lungcancer. It aims to understand what information is most helpful & where support can be improved. #LCSM 👉 shef.qualtrics.com/jfe/form/SV_...

submitted 3 days ago • 0 comments

If you don't have access to transport, getting to medical appointments can be difficult and expensive. Check out our latest information about the support available to help make this easier for you - bit.ly/3EyKtUJ

submitted 8 days ago • 0 comments

🏃‍♀️ Brighton Marathon – Last Call! We’ve got places left for the Brighton Marathon on 6th April, & time is ticking! 🔹 We cover your entry fee 🔹 You commit to modest fundraising 🔹 You run for ALK+ UK and help raise awareness for lung cancer Please pass it on! #LCSM 👉 www.alkpositive.org.uk/events

submitted 7 days ago • 0 comments

The Society of Thoracic Surgeons’ new guidelines on surgery for oligometastatic #lungcancer (NSCLC) are now published in the March issue of The Annals of Thoracic Surgery—an important step in bringing these recommendations into clinical discussions & patient care. #LCSM 👉 shorturl.at/DE62n

submitted 8 days ago • 0 comments

This study found ALK, EGFR, BRAF & MET in 4% of squamous lung cancer cases. NGS matters—because finding the right mutation means access to the right treatment. 🔗 www.clinical-lung-cancer.com/article/S152... #LCSM

submitted 11 days ago • 1 comment

I’m loving the steep learning curve of ALK-TKI resistance mechanisms I seem to be climbing at present. Also that we are finally getting this data delivered to the clinic. We now need to make this information actionable! #LCSM @btog.bsky.social @alkpositiveuk.bsky.social

submitted 11 days ago • 0 comments

What makes #lungcancer spread? New research in Nature Genetics shows that tracking how much tumour cells divide can help distinguish primary tumours from metastases. This could improve diagnosis & treatment decisions for the future of lung cancer care. ➡️ www.nature.com/articles/s41... #LCSM

submitted 11 days ago • 0 comments

Interesting opinion piece in JTO: @bensolomon1.bsky.social & colleagues argue that lorlatinib should be the preferred 1st-line treatment for advanced ALK+ #lungcancer, citing longest PFS to date & strong CNS activity. A key debate in ALK+ lung cancer care. 🔗 www.jto.org/article/S155... #LCSM

submitted 13 days ago • 0 comments

New study from China raises concerns about #lungcancer overdiagnosis due to widespread low-dose CT screening in ave-risk groups. Early detection saves lives, but screening strategies must balance benefits & risks. Timely research as the UK rolls out targeted lung screening shorturl.at/rF0rF #lcsm

submitted 14 days ago • 0 comments

1st 5 speakers for our ALK+ #lungcancer patient conference are confirmed: @drsanjaypopat.bsky.social @prof-ali-g.bsky.social @tnewsomdavis.bsky.social @fabiogomes-go.bsky.social & Dr. S Ghosh. Free for ALK+ pts (+1), incl. travel/accom (26–28 Sept, Radisson Red, Heathrow) 🔗 shorturl.at/1gUxP #LCSM

submitted 15 days ago • 0 comments

Could surgery be a new option for stage 4 #lungcancer? 🔍 New U.S. guidelines spark global discussions about using Local Consolidative Therapy (LCT) for select cases. Prof. Alastair Greystoke discussed this at our ALK+ patient conference 🔗 youtu.be/qhnJDOlJUPo #lcsm

submitted 18 days ago • 0 comments

We want to help everyone find trusted #HealthInformation. Our one-page guide includes 7 questions people can ask to help them decide if information can be trusted. It is available online and for download here: piftick.org.uk/finding-trus... Watch the video here: www.youtube.com/watch?v=5df9...

submitted 22 days ago • 0 comments

A few weeks ago I wrote about how thousands of people are being harmed or even killed by long waits in the NHS. This week I took a look at some of the new ways the NHS is prioritising people for surgery using AI and other tools: www.thetimes.com/uk/healthcar...

submitted 19 days ago • 3 comments

🚨 BREAKING NEWS: #Lungcancer in non-smokers is now the 5th deadliest cancer globally. 📊 A major new report in The Lancet Respiratory Medicine reveals that 200,000 cases in 2022 were linked to air pollution. Shockingly, 99% of the world’s population are now exposed to unsafe air. #LCSM

submitted 22 days ago • 0 comments

Yesterday, we joined Radiotherapy UK at their #CatchUpWithCancer event in Westminster to demand urgent improvements in cancer care. Over 500,000 patients have faced deadly delays of more than 62 days. 🏆 We even met Bryan Robson OBE, who came to show his support! #WorldCancerDay #LungCancer #LCSM

submitted 23 days ago • 0 comments

Did you know today is #WorldCancerDay? Certified #PIFTick members provide trusted information on cancer. You can view all Trusted Information Creators here: piftick.org.uk/members/tick... Download the latest PIF TICK directory here: piftick.org.uk/wp-content/u... #WCD2025

submitted 24 days ago • 1 comment

#Lungcancer isn’t one story. Every experience is unique. Today is World Cancer Day, and we’re pushing for greater awareness & action. This year’s theme is “United by Unique,” - no one should be defined by their diagnosis or “patient” status. 💙 www.allyouneedislungs.org.uk/volunteers-v... #LCSM

submitted 24 days ago • 0 comments

#Lungcancer is the No.1 cancer killer of women in the UK, yet awareness and funding still lag behind. It causes 20% of cancer deaths in UK women—more than breast, ovarian, & cervical cancer combined.* This needs to change. Lung cancer in women’s health must be a priority. #LCSM * All data CRUK

submitted 27 days ago • 1 comment

Only 1.5% of #lungcancer research focuses on supportive & palliative care. Most people with lung cancer need this, yet it’s almost ignored. This has to change. Debra Montague, ALK+ UK Chair, says: ‘Research must go beyond survival & truly consider QoL.’ Read GLCC’s statement: shorturl.at/tYq1G #LCSM

submitted 31 days ago • 0 comments

Our first All You Need is Lungs meeting for 2025! We’re absolutely determined to keep #lungcancer awareness going all year round because the need for understanding, education & support doesn’t stop after November (LCAM). Be part of our 2025 campaign → allyouneedislungs.org.uk/2025-volunte... #LCSM

submitted 32 days ago • 0 comments

The right information can make a huge difference to people like Emma. It is wonderful to see the PIF TICK on invaluable resources like those produced by @alkpositiveuk.bsky.social and all our certified Trusted Information Creators. #HIW2025 #PIFTick #HealthInformation

submitted 37 days ago • 0 comments

For Emma, losing her licence after a #LungCancer diagnosis with #BrainMets felt like losing her independence. 70% of #ALK+ pts get 🧠 mets, yet many don't get clear guidance on driving. That’s why our DVLA Advisory Panel created this @pifonline.bsky.social certified guide #LCSM 📌 shorturl.at/k20oo

submitted 37 days ago • 1 comment

No Welsh health board has met the 62-day cancer treatment target since 2020. For those with #ALK+ #lungcancer, delays in diagnosis & treatment cost lives. Wales needs faster biomarker testing & real action—not just reports. #LCSM www.southwalesargus.co.uk/news/2486655...

submitted 38 days ago • 0 comments

#Lungcancer is one of the 6 less survivable cancers, but it doesn’t have to be. This Less Survivable Cancers Awareness Week (13–20 Jan), we’re calling for: ✅ Earlier diagnosis ✅ Better symptom awareness ✅ > cancer screening ✅ > research funding It’s time to close the deadly cancer gap. #LCSM

submitted 43 days ago • 0 comments

🚨 Big #ALK+ #lungcancer trial update! Nuvalent says pivotal ALKOVE-1 results expected this year—bringing neladalkib (NVL-655) closer to approval. This next-gen ALK inhibitor tackles resistance mutations & 🧠 mets. A Phase 3 trial for TKI-naïve ALK+ NSCLC is also starting. 🔗 shorturl.at/3f9EX #LCSM

submitted 45 days ago • 0 comments

Run the Bath Half for ALK+ UK! 🏃‍♂️💙 We’ve got 4 charity places for the Bath Half Marathon on 16th March 2025 & we need runners! We’ll cover the fee—you just need to fundraise to help us support those living with #ALK+ #lungcancer. If you’re interested 📧 [email protected] #BathHalf #LCSM

submitted 46 days ago • 0 comments

Weight gain on #ALK #lungcancer TKIs—something many experience but isn’t often talked about. This editorial explores why it happens, the impact (especially with alectinib), and whether treatments like GLP-1 meds or drug monitoring could help. #LCSM ascopubs.org/doi/10.1200/...

submitted 47 days ago • 0 comments

As patient advocates, we know how few options exist after targeted therapy for #EGFR+ and #ALK+ #lungcancer. It's good to see potential new treatments emerging. #lcsm @alkpositiveuk.bsky.social @alkpositive.bsky.social ascopubs.org/doi/10.1200/...

submitted 51 days ago • 2 comments

🔥Journal of Clinical Oncology🆙 ✅TROPION-Lung05: Dato-DXd in Advanced or Metastatic NSCLC With Actionable Genomic Alterations 🎯 #EGFR #ALK #ROS1 #RET #BRAF #MET 👥Dr. Jacob Sands ✅NCT04484142 #LCSM @oncoalert.bsky.social @ascocancer.bsky.social @ascopost.bsky.social ascopubs.org/doi/10.1200/...

submitted 52 days ago • 0 comments

There’s a lot of info online about #lungcancer - some helpful, some…not so much. We’re proud to be PIF TICK re-certified, meaning everything we share is: ✅ Evidence-based ✅ Up to date ✅ Easy to understand No guesswork. Just reliable info when you need it. 🙏 @pifonline.bsky.social #ALK #LCSM

submitted 52 days ago • 1 comment

Faster lung cancer testing is a step forward—earlier diagnosis means ⬆️ chances for curative trtmt. But it’s just a piece of the puzzle. If drs don’t realise anyone can get #lungcancer, they won’t order the right tests. Awareness must go hand in hand with access. #lcsm www.bbc.com/news/article...

submitted 53 days ago • 0 comments

Caring for a loved one with #lungcancer comes with emotional & mental challenges & you can only support others effectively when you look after yourself. Our next TALK-Positive online course, designed specifically for carers of people with ALK+, starts 21 Jan. #LCSM 🔗 www.canva.com/design/DAGQQ...

submitted 53 days ago • 0 comments

Delighted to welcome Callum Cobb to our Board of Trustees! Callum, who lost his mum to ALK+ #lungcancer last March, ran 12 marathons in 2024 to raise funds & awareness. With an MBA and tech HR expertise, he’s ready to boost our fundraising & inspire hope. 💙 #NSCLC #LCSM

submitted 56 days ago • 0 comments

We’ve got lots happening in 2025 from fundraising events & support groups to our 4th ALK+ UK #LungCancer Patient Conference 🔗 www.alkpositive.org.uk/copy-of-events Our monthly online coffee mornings are back on the last Wednesday of every month ☕, plus quarterly regional lunch meet-ups. #LCSM #ALK

submitted 57 days ago • 0 comments

Dear 2025 Please… 💙 End the stigma around lung cancer—outdated stereotypes have no place 💙 Bring treatments that help us live, not just survive 💙 Make earlier diagnoses possible—too many are diagnosed late Let’s rewrite what it means to face #lungcancer this year. #LCSM

submitted 59 days ago • 0 comments

This time of year can magnify the challenges faced by families dealing with ALK+ #lungcancer. Carers & loved ones can face unique pressures - we're here to offer support with our free 6-week TALK-Positive Emotional Wellbeing course, starts Jan 21. #LCSM More info → www.canva.com/design/DAGQQ...

submitted 60 days ago • 0 comments

As we end 2024, there’s real progress to look forward to in #lungcancer care for 2025. Here are 3 key advances to watch: ▪️AI bringing more personalised treatments ▪️Progress in mRNA vaccines ▪️Groundbreaking genomic therapies tackling resistance & improving outcomes #LCSM

submitted 63 days ago • 0 comments

Self-referral for #lungcancer tests could be a crucial step forward. 1/3 of our #EGFR+ community visited their GP more than 3 times before diagnosis, with symptoms dismissed because they didn’t fit the usual stereotypes. Early testing access can save lives. www.theguardian.com/society/2024... #LCSM

submitted 63 days ago • 0 comments

Christmas can be tough for those living with or caring for someone with ALK+ lung cancer. We’re thinking of everyone in our amazing community and all who support it. Sending love and strength this festive season—we hope it’s whatever you wish and need it to be. Take care of yourselves 💙🎄🫶 #LCSM

submitted 67 days ago • 0 comments

"My symptoms, starting with fatigue & left side pain in 2021, were dismissed as stomach issues despite multiple GP visits. An unrelated X-ray in 2022 revealed Stage 4 ALK+ #lungcancer. I’d never smoked." Read Gary's story www.allyouneedislungs.org.uk/volunteers-v... #AnyoneCanGetLungCancer #LCSM

submitted 70 days ago • 0 comments

This autumn, we shared our 2023 Annual Report, highlighting milestones like hosting the largest UK #ALK+ conference, growing regional support & advocating for earlier #lungcancer diagnosis. 🙏 Takeda UK & Ireland for your kind words: “Bringing this community together is ALK+ UK's superpower.” #LCSM

submitted 70 days ago • 0 comments

FDA approves ensartinib for #ALK NSCLC based on phase III eXALT3 trial that compared 1L ensartinib & crizotinib. PFS favored ensartinib (25.8m vs 12.7m, HR 0.56), no OS difference. Active drug but unlikely to impact care for most, unless cost is much less. #OncSky #LCSM www.fda.gov/drugs/resour...

submitted 72 days ago • 0 comments

Living with lung cancer isn’t just about battling a disease; it’s about navigating an entirely different reality. These quotes are a glimpse into the struggles, fears, and uncertainties faced by those living with young lung cancer every day. 💔 #LivingWithLungCancer #CancerAdvocacy #lcsm

submitted 80 days ago • 0 comments

Don’t forget our pregnancy and lung cancer registry! Only 20 mins! Send us an email

submitted 74 days ago • 0 comments

FDA approves ensartinib for ALK+ advanced #lungcancer in the US, offering improved outcomes over crizotinib. While not yet approved in the UK, it’s a promising step forward. #LCSM www.targetedonc.com/view/fda-app...

submitted 72 days ago • 0 comments