ALK Positive Lung Cancer UK
@alkpositiveuk.bsky.social
💙 Supporting, empowering & advocating for those with ALK+ lung cancer in the UK
🧬 Advocacy | Awareness | Trusted resources
🫶 NICE-recognised, improving lives, driving change, and amplifying our community voices
linktr.ee/alkpositivelungcanceruk
🧬 Advocacy | Awareness | Trusted resources
🫶 NICE-recognised, improving lives, driving change, and amplifying our community voices
linktr.ee/alkpositivelungcanceruk
Reposted by ALK Positive Lung Cancer UK
Since the early 1990s, #lungcancer rates in women in the UK have risen by around a third (34%). Lung cancer can affect anyone even younger people.
Be alert to symptoms that don’t go away, like a cough that lingers, breathlessness, fatigue or chest/shoulder pain. Source: Cancer Research UK #LCSM
Be alert to symptoms that don’t go away, like a cough that lingers, breathlessness, fatigue or chest/shoulder pain. Source: Cancer Research UK #LCSM
November 19, 2025 at 7:38 AM
Since the early 1990s, #lungcancer rates in women in the UK have risen by around a third (34%). Lung cancer can affect anyone even younger people.
Be alert to symptoms that don’t go away, like a cough that lingers, breathlessness, fatigue or chest/shoulder pain. Source: Cancer Research UK #LCSM
Be alert to symptoms that don’t go away, like a cough that lingers, breathlessness, fatigue or chest/shoulder pain. Source: Cancer Research UK #LCSM
CRUK has announced LungVax - a new preventative #lungcancer vaccine being developed by Oxford & UCL.
Phase 1 planned for UK next summer & aimed at higher risk, eg those in screening or been treated for early-stage disease.
Not a treatment & it’s not mutation-specific, but it’s a big step. #LCSM
Phase 1 planned for UK next summer & aimed at higher risk, eg those in screening or been treated for early-stage disease.
Not a treatment & it’s not mutation-specific, but it’s a big step. #LCSM
November 18, 2025 at 8:40 AM
CRUK has announced LungVax - a new preventative #lungcancer vaccine being developed by Oxford & UCL.
Phase 1 planned for UK next summer & aimed at higher risk, eg those in screening or been treated for early-stage disease.
Not a treatment & it’s not mutation-specific, but it’s a big step. #LCSM
Phase 1 planned for UK next summer & aimed at higher risk, eg those in screening or been treated for early-stage disease.
Not a treatment & it’s not mutation-specific, but it’s a big step. #LCSM
Reposted by ALK Positive Lung Cancer UK
PIF member @selfcareforum.bsky.social will be posting tips this week to mark #SelfCareWeek. Join us over on LinkedIn for a Q&A today at noon too: www.linkedin.com/feed/update/...
#SelfCareWeek
#SelfCareWeek
It's the start of #SelfCareWeek but what is #selfcare? We practise it everyday, from brushing our teeth, to eating healthily, and exercising. It's what we do for our
#MindBody every day. bit.ly/3HlxbJd @adewilliams.bsky.social @clivenicholson1.bsky.social @bromleywell.bsky.social
#MindBody every day. bit.ly/3HlxbJd @adewilliams.bsky.social @clivenicholson1.bsky.social @bromleywell.bsky.social
November 17, 2025 at 11:42 AM
PIF member @selfcareforum.bsky.social will be posting tips this week to mark #SelfCareWeek. Join us over on LinkedIn for a Q&A today at noon too: www.linkedin.com/feed/update/...
#SelfCareWeek
#SelfCareWeek
Reposted by ALK Positive Lung Cancer UK
Catherine was diagnosed with stage 1 #lungcancer in 2019.
She’d always been careful about her health, and it came as a big shock. In 2023 she was told it was stage 4 ROS1+ which meant her cancer could be treated with a daily targeted therapy.
Thank you Catherine for sharing your story.
#LCSM
She’d always been careful about her health, and it came as a big shock. In 2023 she was told it was stage 4 ROS1+ which meant her cancer could be treated with a daily targeted therapy.
Thank you Catherine for sharing your story.
#LCSM
November 17, 2025 at 10:46 PM
Catherine was diagnosed with stage 1 #lungcancer in 2019.
She’d always been careful about her health, and it came as a big shock. In 2023 she was told it was stage 4 ROS1+ which meant her cancer could be treated with a daily targeted therapy.
Thank you Catherine for sharing your story.
#LCSM
She’d always been careful about her health, and it came as a big shock. In 2023 she was told it was stage 4 ROS1+ which meant her cancer could be treated with a daily targeted therapy.
Thank you Catherine for sharing your story.
#LCSM
Nuvalent has published pivotal ALKOVE-1 data for neladalkib in ALK-positive #lungcancer.
Responses after lorlatinib, activity in G1202R, and signs of intracranial benefit address a major gap in the current post-TKI landscape. #LCSM
Responses after lorlatinib, activity in G1202R, and signs of intracranial benefit address a major gap in the current post-TKI landscape. #LCSM
November 17, 2025 at 1:21 PM
Nuvalent has published pivotal ALKOVE-1 data for neladalkib in ALK-positive #lungcancer.
Responses after lorlatinib, activity in G1202R, and signs of intracranial benefit address a major gap in the current post-TKI landscape. #LCSM
Responses after lorlatinib, activity in G1202R, and signs of intracranial benefit address a major gap in the current post-TKI landscape. #LCSM
Reposted by ALK Positive Lung Cancer UK
Innovation drives progress. From clinical research to education, BTOG supports the lung cancer community in delivering better treatments and outcomes.
#LungCancerAwareness #LCSM #LungCancer
#LungCancerAwareness #LCSM #LungCancer
November 17, 2025 at 10:00 AM
Innovation drives progress. From clinical research to education, BTOG supports the lung cancer community in delivering better treatments and outcomes.
#LungCancerAwareness #LCSM #LungCancer
#LungCancerAwareness #LCSM #LungCancer
Reposted by ALK Positive Lung Cancer UK
Every day, 130 people in the UK are diagnosed with #lungcancer. That’s one person every 11 minutes.
Lung cancer can affect anyone & spotting it early can make a real difference.
Be alert to symptoms that don’t go away, like: a cough, breathlessness, fatigue, pain in chest/shoulder/back. #LCSM
Lung cancer can affect anyone & spotting it early can make a real difference.
Be alert to symptoms that don’t go away, like: a cough, breathlessness, fatigue, pain in chest/shoulder/back. #LCSM
November 16, 2025 at 8:43 AM
Every day, 130 people in the UK are diagnosed with #lungcancer. That’s one person every 11 minutes.
Lung cancer can affect anyone & spotting it early can make a real difference.
Be alert to symptoms that don’t go away, like: a cough, breathlessness, fatigue, pain in chest/shoulder/back. #LCSM
Lung cancer can affect anyone & spotting it early can make a real difference.
Be alert to symptoms that don’t go away, like: a cough, breathlessness, fatigue, pain in chest/shoulder/back. #LCSM
ALKOVE-1 topline data for neladalkib due tomorrow 17 November.
For our community, this is the group with the fewest targeted options: people who’ve already had several ALK+ #lungcancer TKIs & are facing resistance often with CNS involvement.
We’ll share the facts once the data is released. #LCSM
For our community, this is the group with the fewest targeted options: people who’ve already had several ALK+ #lungcancer TKIs & are facing resistance often with CNS involvement.
We’ll share the facts once the data is released. #LCSM
November 16, 2025 at 9:32 AM
ALKOVE-1 topline data for neladalkib due tomorrow 17 November.
For our community, this is the group with the fewest targeted options: people who’ve already had several ALK+ #lungcancer TKIs & are facing resistance often with CNS involvement.
We’ll share the facts once the data is released. #LCSM
For our community, this is the group with the fewest targeted options: people who’ve already had several ALK+ #lungcancer TKIs & are facing resistance often with CNS involvement.
We’ll share the facts once the data is released. #LCSM
Reposted by ALK Positive Lung Cancer UK
In loving memory of Sophie ♡
Diagnosed with stage 4 EGFR+ #lungcancer at 24. She died this September aged 28. Shared with her family’s blessing.
Her only early sign was a crackle in her chest at night. She felt well. Months of tests followed before she heard the word “cancer.”
#LCSM
Diagnosed with stage 4 EGFR+ #lungcancer at 24. She died this September aged 28. Shared with her family’s blessing.
Her only early sign was a crackle in her chest at night. She felt well. Months of tests followed before she heard the word “cancer.”
#LCSM
November 15, 2025 at 11:05 AM
In loving memory of Sophie ♡
Diagnosed with stage 4 EGFR+ #lungcancer at 24. She died this September aged 28. Shared with her family’s blessing.
Her only early sign was a crackle in her chest at night. She felt well. Months of tests followed before she heard the word “cancer.”
#LCSM
Diagnosed with stage 4 EGFR+ #lungcancer at 24. She died this September aged 28. Shared with her family’s blessing.
Her only early sign was a crackle in her chest at night. She felt well. Months of tests followed before she heard the word “cancer.”
#LCSM
Lynsey Conway, our CEO, took part in today’s Compassionate Cancer Care workshop, joining cancer nurses, academics and support groups to talk about what better support looks like for people living with cancer and how this can help our ALK+ #lungcancer community. #LCSM
November 14, 2025 at 10:11 PM
Lynsey Conway, our CEO, took part in today’s Compassionate Cancer Care workshop, joining cancer nurses, academics and support groups to talk about what better support looks like for people living with cancer and how this can help our ALK+ #lungcancer community. #LCSM
A new systematic review looks at 5 ensartinib trials in ALK+ #lungcancer.
It points to good response rates & generally tolerable side-effect profile, but the evidence is still early - most studies were open-label & we still need long-term data & comparisons with newer TKIs.
PubMed: 41148187 #LCSM
It points to good response rates & generally tolerable side-effect profile, but the evidence is still early - most studies were open-label & we still need long-term data & comparisons with newer TKIs.
PubMed: 41148187 #LCSM
November 13, 2025 at 11:04 PM
A new systematic review looks at 5 ensartinib trials in ALK+ #lungcancer.
It points to good response rates & generally tolerable side-effect profile, but the evidence is still early - most studies were open-label & we still need long-term data & comparisons with newer TKIs.
PubMed: 41148187 #LCSM
It points to good response rates & generally tolerable side-effect profile, but the evidence is still early - most studies were open-label & we still need long-term data & comparisons with newer TKIs.
PubMed: 41148187 #LCSM
Our Chair Debra joins Rad Chat to talk about the run-up to her #lungcancer diagnosis, the early signs she didn’t recognise & why she went on to found ALK+ UK. She shares what the first mnths were like, the gap she saw in support, & how much has changed in 9 yrs.
share.transistor.fm/s/8c25a0b0 #LCSM
share.transistor.fm/s/8c25a0b0 #LCSM
November 13, 2025 at 8:40 PM
Our Chair Debra joins Rad Chat to talk about the run-up to her #lungcancer diagnosis, the early signs she didn’t recognise & why she went on to found ALK+ UK. She shares what the first mnths were like, the gap she saw in support, & how much has changed in 9 yrs.
share.transistor.fm/s/8c25a0b0 #LCSM
share.transistor.fm/s/8c25a0b0 #LCSM
New research across 21 European countries suggests a link between high indoor radon (>400 Bq/m³) and ALK+ #lungcancer – but not EGFR.
It’s one of the first studies to explore how environment and biology might connect in oncogene-driven NSCLC.
(TAMO 2025) #LCSM
It’s one of the first studies to explore how environment and biology might connect in oncogene-driven NSCLC.
(TAMO 2025) #LCSM
November 12, 2025 at 8:45 PM
New research across 21 European countries suggests a link between high indoor radon (>400 Bq/m³) and ALK+ #lungcancer – but not EGFR.
It’s one of the first studies to explore how environment and biology might connect in oncogene-driven NSCLC.
(TAMO 2025) #LCSM
It’s one of the first studies to explore how environment and biology might connect in oncogene-driven NSCLC.
(TAMO 2025) #LCSM
BBC reports today: only 3 of 121 NHS trusts are meeting the 62-day cancer target.
In ALK+ #lungcancer, delays to scans, testing or treatment can seriously affect outcomes. Every 4-week wait for cancer treatment is linked to about a 10% drop in survival.
📎 bbc.co.uk/news/articles/cgjdpqvpj #LCSM
In ALK+ #lungcancer, delays to scans, testing or treatment can seriously affect outcomes. Every 4-week wait for cancer treatment is linked to about a 10% drop in survival.
📎 bbc.co.uk/news/articles/cgjdpqvpj #LCSM
November 11, 2025 at 9:35 AM
BBC reports today: only 3 of 121 NHS trusts are meeting the 62-day cancer target.
In ALK+ #lungcancer, delays to scans, testing or treatment can seriously affect outcomes. Every 4-week wait for cancer treatment is linked to about a 10% drop in survival.
📎 bbc.co.uk/news/articles/cgjdpqvpj #LCSM
In ALK+ #lungcancer, delays to scans, testing or treatment can seriously affect outcomes. Every 4-week wait for cancer treatment is linked to about a 10% drop in survival.
📎 bbc.co.uk/news/articles/cgjdpqvpj #LCSM
Reposted by ALK Positive Lung Cancer UK
#Lungcancer is often found late. Spotting it early can make a big difference.
Be alert to symptoms that don’t go away: cough, breathlessness, fatigue, chest/shoulder/back pain, hoarseness, unexplained weight loss.
Staging shows how far the cancer has spread & helps doctors plan treatment. #LCSM
Be alert to symptoms that don’t go away: cough, breathlessness, fatigue, chest/shoulder/back pain, hoarseness, unexplained weight loss.
Staging shows how far the cancer has spread & helps doctors plan treatment. #LCSM
November 11, 2025 at 8:50 AM
#Lungcancer is often found late. Spotting it early can make a big difference.
Be alert to symptoms that don’t go away: cough, breathlessness, fatigue, chest/shoulder/back pain, hoarseness, unexplained weight loss.
Staging shows how far the cancer has spread & helps doctors plan treatment. #LCSM
Be alert to symptoms that don’t go away: cough, breathlessness, fatigue, chest/shoulder/back pain, hoarseness, unexplained weight loss.
Staging shows how far the cancer has spread & helps doctors plan treatment. #LCSM
Reposted by ALK Positive Lung Cancer UK
Sarah thought her #lungcancer symptoms were the menopause.
She was exhausted, dizzy and struggling with constant headaches. Even her neurologist thought it was menopause-related.
A CT head scan “just to rule anything out” found 6 brain mets. And in 2024, she was diagnosed with stage 4 EGFR+. #LCSM
She was exhausted, dizzy and struggling with constant headaches. Even her neurologist thought it was menopause-related.
A CT head scan “just to rule anything out” found 6 brain mets. And in 2024, she was diagnosed with stage 4 EGFR+. #LCSM
November 10, 2025 at 8:41 AM
Sarah thought her #lungcancer symptoms were the menopause.
She was exhausted, dizzy and struggling with constant headaches. Even her neurologist thought it was menopause-related.
A CT head scan “just to rule anything out” found 6 brain mets. And in 2024, she was diagnosed with stage 4 EGFR+. #LCSM
She was exhausted, dizzy and struggling with constant headaches. Even her neurologist thought it was menopause-related.
A CT head scan “just to rule anything out” found 6 brain mets. And in 2024, she was diagnosed with stage 4 EGFR+. #LCSM
Reposted by ALK Positive Lung Cancer UK
We each carry around six million variations in our DNA.
Henry Scowcroft explores how scientists like @gregfindlay.bsky.social and @carovinuesa.bsky.social are helping unravel the effects of these variants, where even a small change can have a big impact on our lives.
www.crick.ac.uk/news/2025-10...
Henry Scowcroft explores how scientists like @gregfindlay.bsky.social and @carovinuesa.bsky.social are helping unravel the effects of these variants, where even a small change can have a big impact on our lives.
www.crick.ac.uk/news/2025-10...
Variants: the typos turning loss into hope
Across the 3 billion ‘letters’ of our DNA, we each carry around 6 million variations. Researchers are unravelling their effects on our lives.
www.crick.ac.uk
November 6, 2025 at 2:44 PM
We each carry around six million variations in our DNA.
Henry Scowcroft explores how scientists like @gregfindlay.bsky.social and @carovinuesa.bsky.social are helping unravel the effects of these variants, where even a small change can have a big impact on our lives.
www.crick.ac.uk/news/2025-10...
Henry Scowcroft explores how scientists like @gregfindlay.bsky.social and @carovinuesa.bsky.social are helping unravel the effects of these variants, where even a small change can have a big impact on our lives.
www.crick.ac.uk/news/2025-10...
Reposted by ALK Positive Lung Cancer UK
Early detection saves lives. Screening, research and collaboration are key to tackling lung cancer. BTOG is committed to advancing knowledge and improving care across the UK.
#LungCancerAwareness #LCSM #LungCancer
#LungCancerAwareness #LCSM #LungCancer
November 10, 2025 at 9:00 AM
Early detection saves lives. Screening, research and collaboration are key to tackling lung cancer. BTOG is committed to advancing knowledge and improving care across the UK.
#LungCancerAwareness #LCSM #LungCancer
#LungCancerAwareness #LCSM #LungCancer
Reposted by ALK Positive Lung Cancer UK
Of ten major chronic diseases in Australia, lung disease is most associated with socio-economic disadvantage.
Researchers used census data from 11 million Australians over 40 to examine links between disease and measures of disadvantage.
Read the report here: buff.ly/PMSnjAU
Researchers used census data from 11 million Australians over 40 to examine links between disease and measures of disadvantage.
Read the report here: buff.ly/PMSnjAU
November 10, 2025 at 5:00 AM
Of ten major chronic diseases in Australia, lung disease is most associated with socio-economic disadvantage.
Researchers used census data from 11 million Australians over 40 to examine links between disease and measures of disadvantage.
Read the report here: buff.ly/PMSnjAU
Researchers used census data from 11 million Australians over 40 to examine links between disease and measures of disadvantage.
Read the report here: buff.ly/PMSnjAU
Reposted by ALK Positive Lung Cancer UK
This is the “new” face of Lung Cancer. Why is it being diagnosed in so many young women? It’s unfortunate that there is 0 zero zilch federal research funding allocated in the “Big Beautiful Bill.” #lcsm www.tiktok.com/t/ZP8DQRpfr/
Emma was diagnosed with stage 4 ALK+ lung cancer when she was 21 weeks pregnant with her second son. What started as numbness in her fingers led to a misdiagnosis before further tests finally revealed...
TikTok video by ALK+ lung cancer UK
www.tiktok.com
November 8, 2025 at 9:47 PM
This is the “new” face of Lung Cancer. Why is it being diagnosed in so many young women? It’s unfortunate that there is 0 zero zilch federal research funding allocated in the “Big Beautiful Bill.” #lcsm www.tiktok.com/t/ZP8DQRpfr/
Reposted by ALK Positive Lung Cancer UK
Gini, part of our All You Need Is Lungs team, shared her story in today’s Mail on Sunday.
Her shoulder pain was put down to breastfeeding discomfort - but it turned out to be stage 4 EGFR+ #lungcancer.
By speaking so openly, Gini is helping raise awareness that lung cancer can affect anyone. #LCSM
Her shoulder pain was put down to breastfeeding discomfort - but it turned out to be stage 4 EGFR+ #lungcancer.
By speaking so openly, Gini is helping raise awareness that lung cancer can affect anyone. #LCSM
November 9, 2025 at 9:47 AM
Gini, part of our All You Need Is Lungs team, shared her story in today’s Mail on Sunday.
Her shoulder pain was put down to breastfeeding discomfort - but it turned out to be stage 4 EGFR+ #lungcancer.
By speaking so openly, Gini is helping raise awareness that lung cancer can affect anyone. #LCSM
Her shoulder pain was put down to breastfeeding discomfort - but it turned out to be stage 4 EGFR+ #lungcancer.
By speaking so openly, Gini is helping raise awareness that lung cancer can affect anyone. #LCSM
New research shows people with ALK+ #lungcancer who already have or later develop liver mets tend to do worse - esp if they appear during trtmt. Newer ALK trtmts are helping control brain spread - but not liver. We need drugs that work better in the liver too. #LCSM
www.jtocrr.org/article/S266...
www.jtocrr.org/article/S266...
November 8, 2025 at 11:43 PM
New research shows people with ALK+ #lungcancer who already have or later develop liver mets tend to do worse - esp if they appear during trtmt. Newer ALK trtmts are helping control brain spread - but not liver. We need drugs that work better in the liver too. #LCSM
www.jtocrr.org/article/S266...
www.jtocrr.org/article/S266...
It’s World Radiography Day & we want to say thank you!
For those with #lungcancer, radiographers play an important role in our lives.
Helping catch cancer early, tracking progress, guiding trtmt decisions. You’re there offering kindness & care every step & make a diff journey a bit easier. #LCSM
For those with #lungcancer, radiographers play an important role in our lives.
Helping catch cancer early, tracking progress, guiding trtmt decisions. You’re there offering kindness & care every step & make a diff journey a bit easier. #LCSM
November 8, 2025 at 8:46 AM
It’s World Radiography Day & we want to say thank you!
For those with #lungcancer, radiographers play an important role in our lives.
Helping catch cancer early, tracking progress, guiding trtmt decisions. You’re there offering kindness & care every step & make a diff journey a bit easier. #LCSM
For those with #lungcancer, radiographers play an important role in our lives.
Helping catch cancer early, tracking progress, guiding trtmt decisions. You’re there offering kindness & care every step & make a diff journey a bit easier. #LCSM
Reposted by ALK Positive Lung Cancer UK
Great to see our comms manager @sheenacampbell.bsky.social discussing our members' concerns about audiences seeking advice directly from AI rather than coming to them.
The article also mentions the value of PIF TICK certification to show health information comes from a Trusted Information Creator:
The article also mentions the value of PIF TICK certification to show health information comes from a Trusted Information Creator:
In this timely blog, Zoe Amar alongside digital experts across the sector explores AI's impact on search, as audiences turn to AI-generated summaries rather than charity websites. Dive in to read why this matters and what you can do to maintain visibility, trust, and support: https://bit.ly/47ei42m
AI’s impact on search: What your charity can do about disintermediation
Zoe Amar talks to fellow digital experts about how charities can respond to the influence of AI summaries and tools on how people find information online.
bit.ly
October 31, 2025 at 3:28 PM
Great to see our comms manager @sheenacampbell.bsky.social discussing our members' concerns about audiences seeking advice directly from AI rather than coming to them.
The article also mentions the value of PIF TICK certification to show health information comes from a Trusted Information Creator:
The article also mentions the value of PIF TICK certification to show health information comes from a Trusted Information Creator:
Reposted by ALK Positive Lung Cancer UK
To mark Self Care Week 2025, we are hosting an event highlighting how health information supports effective self care and self management.
Join us on 20 November from noon until 1.30pm to explore the latest research and hear examples of good practice.
Sign up at pifonline.org.uk/training-eve...
Join us on 20 November from noon until 1.30pm to explore the latest research and hear examples of good practice.
Sign up at pifonline.org.uk/training-eve...
November 6, 2025 at 11:17 AM
To mark Self Care Week 2025, we are hosting an event highlighting how health information supports effective self care and self management.
Join us on 20 November from noon until 1.30pm to explore the latest research and hear examples of good practice.
Sign up at pifonline.org.uk/training-eve...
Join us on 20 November from noon until 1.30pm to explore the latest research and hear examples of good practice.
Sign up at pifonline.org.uk/training-eve...