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
ICPC has launched a global survey on how people understand and use the word “cure” in cancer.
It’s a complex term in #lungcancer, where experiences vary widely across stages and outcomes. ICPC is gathering views worldwide.
Survey: www.surveymonkey.com/r/Cure_Survey #LCSM
It’s a complex term in #lungcancer, where experiences vary widely across stages and outcomes. ICPC is gathering views worldwide.
Survey: www.surveymonkey.com/r/Cure_Survey #LCSM
December 9, 2025 at 9:07 AM
ICPC has launched a global survey on how people understand and use the word “cure” in cancer.
It’s a complex term in #lungcancer, where experiences vary widely across stages and outcomes. ICPC is gathering views worldwide.
Survey: www.surveymonkey.com/r/Cure_Survey #LCSM
It’s a complex term in #lungcancer, where experiences vary widely across stages and outcomes. ICPC is gathering views worldwide.
Survey: www.surveymonkey.com/r/Cure_Survey #LCSM
What gives me hope is what’s coming next - @prof-ali-g.bsky.social, #lungcancer oncologist, talks through the developments he’s watching in ALK+ 🆕 tablets, 🆕 classes of drugs like ADCs, & approaches that use the immune system in more targeted ways. Could open up more options in the yrs ahead. #LCSM
December 7, 2025 at 9:33 AM
What gives me hope is what’s coming next - @prof-ali-g.bsky.social, #lungcancer oncologist, talks through the developments he’s watching in ALK+ 🆕 tablets, 🆕 classes of drugs like ADCs, & approaches that use the immune system in more targeted ways. Could open up more options in the yrs ahead. #LCSM
Reposted by ALK Positive Lung Cancer UK
What does jewellery made by bacteria look like?
Every year, students from the MA Biodesign course at Central Saint Martins, @researchual.bsky.social collaborate with the Making Lab and other teams from the Crick to explore the intersection between art and science.
www.youtube.com/watch?v=fFPB...
Every year, students from the MA Biodesign course at Central Saint Martins, @researchual.bsky.social collaborate with the Making Lab and other teams from the Crick to explore the intersection between art and science.
www.youtube.com/watch?v=fFPB...
When Art Meets Science
YouTube video by The Francis Crick Institute
www.youtube.com
December 5, 2025 at 2:53 PM
What does jewellery made by bacteria look like?
Every year, students from the MA Biodesign course at Central Saint Martins, @researchual.bsky.social collaborate with the Making Lab and other teams from the Crick to explore the intersection between art and science.
www.youtube.com/watch?v=fFPB...
Every year, students from the MA Biodesign course at Central Saint Martins, @researchual.bsky.social collaborate with the Making Lab and other teams from the Crick to explore the intersection between art and science.
www.youtube.com/watch?v=fFPB...
#LungCancer survival stats online are often years out of date. More people with stage 4 are now living longer, some having surgery after a good response and a few reaching NED. Outcomes are shifting in a better direction. 💙 #LCSM
Source: SEER data reflects outcomes from years earlier.
Source: SEER data reflects outcomes from years earlier.
December 6, 2025 at 9:56 AM
#LungCancer survival stats online are often years out of date. More people with stage 4 are now living longer, some having surgery after a good response and a few reaching NED. Outcomes are shifting in a better direction. 💙 #LCSM
Source: SEER data reflects outcomes from years earlier.
Source: SEER data reflects outcomes from years earlier.
Reposted by ALK Positive Lung Cancer UK
Reposted by ALK Positive Lung Cancer UK
Reposted by ALK Positive Lung Cancer UK
Tell us about your progress on health literacy.
We want to hear from health information producers to find out how the sector is embedding health and digital literacy into services.
Let us know your views by 5 December: lnkd.in/eupCvfHi
#HealthLiteracy
#DigitalLiteracy
We want to hear from health information producers to find out how the sector is embedding health and digital literacy into services.
Let us know your views by 5 December: lnkd.in/eupCvfHi
#HealthLiteracy
#DigitalLiteracy
December 3, 2025 at 11:27 AM
Tell us about your progress on health literacy.
We want to hear from health information producers to find out how the sector is embedding health and digital literacy into services.
Let us know your views by 5 December: lnkd.in/eupCvfHi
#HealthLiteracy
#DigitalLiteracy
We want to hear from health information producers to find out how the sector is embedding health and digital literacy into services.
Let us know your views by 5 December: lnkd.in/eupCvfHi
#HealthLiteracy
#DigitalLiteracy
#Lungcancer needs more awareness and better support, and our Big Give week helps us push that forward.
From now until midday 9 December, any donation made through our Big Give link donate.biggive.org/campaign/a05... will be doubled (up to £5,000).
£10 ➡️ £20. £25 ➡️ £50. £50 ➡️ £100. #LCAM
From now until midday 9 December, any donation made through our Big Give link donate.biggive.org/campaign/a05... will be doubled (up to £5,000).
£10 ➡️ £20. £25 ➡️ £50. £50 ➡️ £100. #LCAM
December 3, 2025 at 9:31 AM
#Lungcancer needs more awareness and better support, and our Big Give week helps us push that forward.
From now until midday 9 December, any donation made through our Big Give link donate.biggive.org/campaign/a05... will be doubled (up to £5,000).
£10 ➡️ £20. £25 ➡️ £50. £50 ➡️ £100. #LCAM
From now until midday 9 December, any donation made through our Big Give link donate.biggive.org/campaign/a05... will be doubled (up to £5,000).
£10 ➡️ £20. £25 ➡️ £50. £50 ➡️ £100. #LCAM
NICE will raise its cost-effectiveness threshold in April 2026 from £20–£30k to £25–£35k. This is a significant shift - for #lungcancer, esp ALK+, newer targeted treatments are often expensive. A higher threshold could make future drugs easier to approve & reach the people who need them. #LCSM
December 1, 2025 at 7:04 PM
NICE will raise its cost-effectiveness threshold in April 2026 from £20–£30k to £25–£35k. This is a significant shift - for #lungcancer, esp ALK+, newer targeted treatments are often expensive. A higher threshold could make future drugs easier to approve & reach the people who need them. #LCSM
A recent TKI update highlights why newer ALK+ #LungCancer drugs are used first: stronger CNS protection + better resistance coverage.
Also recognises while lorlatinib is effective, the neuro side-effects can be tough. Trtmnt choices need to balance both.
www.onclive.com/view/newer-g...
#LCSM
Also recognises while lorlatinib is effective, the neuro side-effects can be tough. Trtmnt choices need to balance both.
www.onclive.com/view/newer-g...
#LCSM
November 30, 2025 at 10:40 PM
A recent TKI update highlights why newer ALK+ #LungCancer drugs are used first: stronger CNS protection + better resistance coverage.
Also recognises while lorlatinib is effective, the neuro side-effects can be tough. Trtmnt choices need to balance both.
www.onclive.com/view/newer-g...
#LCSM
Also recognises while lorlatinib is effective, the neuro side-effects can be tough. Trtmnt choices need to balance both.
www.onclive.com/view/newer-g...
#LCSM
Reposted by ALK Positive Lung Cancer UK
Social media can be a great way to find health information, but there are risks when using and sharing content.
Our updated guide for the public gives tips on how to find trusted health information on social media.
Download at piftick.org.uk/guide/how-to...
#PIFTICK
#HealthInformation
Our updated guide for the public gives tips on how to find trusted health information on social media.
Download at piftick.org.uk/guide/how-to...
#PIFTICK
#HealthInformation
November 27, 2025 at 1:25 PM
Social media can be a great way to find health information, but there are risks when using and sharing content.
Our updated guide for the public gives tips on how to find trusted health information on social media.
Download at piftick.org.uk/guide/how-to...
#PIFTICK
#HealthInformation
Our updated guide for the public gives tips on how to find trusted health information on social media.
Download at piftick.org.uk/guide/how-to...
#PIFTICK
#HealthInformation
Reposted by ALK Positive Lung Cancer UK
This #LungCancer Awareness Month we wanted to focus on self-care - everyday things that help us get through the tough days.
We didn’t expect how many of our volunteers would talk about their pets!
So, we’re taking a moment for the furry supporters who make the hard days a bit lighter. #LCSM
We didn’t expect how many of our volunteers would talk about their pets!
So, we’re taking a moment for the furry supporters who make the hard days a bit lighter. #LCSM
November 30, 2025 at 5:15 PM
This #LungCancer Awareness Month we wanted to focus on self-care - everyday things that help us get through the tough days.
We didn’t expect how many of our volunteers would talk about their pets!
So, we’re taking a moment for the furry supporters who make the hard days a bit lighter. #LCSM
We didn’t expect how many of our volunteers would talk about their pets!
So, we’re taking a moment for the furry supporters who make the hard days a bit lighter. #LCSM
A 🆕 large real-world study in ALK+ #lungcancer found that new brain mets developing during 1st-line ALK TKI trtmt were linked to significantly worse outcomes.
Baseline brain mets didn’t show this effect.
Strong CNS protection early on is essential.
www.lungcancerjournal.info/article/S016... #LCSM
Baseline brain mets didn’t show this effect.
Strong CNS protection early on is essential.
www.lungcancerjournal.info/article/S016... #LCSM
November 29, 2025 at 9:01 AM
A 🆕 large real-world study in ALK+ #lungcancer found that new brain mets developing during 1st-line ALK TKI trtmt were linked to significantly worse outcomes.
Baseline brain mets didn’t show this effect.
Strong CNS protection early on is essential.
www.lungcancerjournal.info/article/S016... #LCSM
Baseline brain mets didn’t show this effect.
Strong CNS protection early on is essential.
www.lungcancerjournal.info/article/S016... #LCSM
Reposted by ALK Positive Lung Cancer UK
On 1st August my diagnosis changed from NSCLC to #SCLC, ending my time on Osimertinib and starting chemo & immunotherapy.
My first diagnosis in 2021 came after months of pain and being told it was tennis elbow or sciatica, until further tests confirmed EGFR+ Stage 4 #lungcancer.
#LCSM
My first diagnosis in 2021 came after months of pain and being told it was tennis elbow or sciatica, until further tests confirmed EGFR+ Stage 4 #lungcancer.
#LCSM
November 28, 2025 at 10:44 AM
On 1st August my diagnosis changed from NSCLC to #SCLC, ending my time on Osimertinib and starting chemo & immunotherapy.
My first diagnosis in 2021 came after months of pain and being told it was tennis elbow or sciatica, until further tests confirmed EGFR+ Stage 4 #lungcancer.
#LCSM
My first diagnosis in 2021 came after months of pain and being told it was tennis elbow or sciatica, until further tests confirmed EGFR+ Stage 4 #lungcancer.
#LCSM
New NCODA review maps out where ALK+ #lungcancer treatment is heading - better CNS-active TKIs, new 4th-gen drugs like neladalkib, and combinations to tackle resistance. Progress is coming, but real-world access + re-testing after progression still lag behind. #LCSM www.ncoda.org/news/advance...
Advances in ALK Inhibition in Non-Small Cell Lung Cancer
Discover how new targeted therapies for ALK-positive lung cancer improve brain protection, overcome resistance, and extend patients’ lives
www.ncoda.org
November 26, 2025 at 5:39 PM
New NCODA review maps out where ALK+ #lungcancer treatment is heading - better CNS-active TKIs, new 4th-gen drugs like neladalkib, and combinations to tackle resistance. Progress is coming, but real-world access + re-testing after progression still lag behind. #LCSM www.ncoda.org/news/advance...
People with ALK+ #lungcancer often aren’t told they can ask their GP for a Cancer Care Review.
@gatewayc.bsky.social highlights how side effects like neuropathy, weight changes & long-term bone or heart issues can be missed unless someone checks in.
www.linkedin.com/pulse/why-st...
#LCSM
@gatewayc.bsky.social highlights how side effects like neuropathy, weight changes & long-term bone or heart issues can be missed unless someone checks in.
www.linkedin.com/pulse/why-st...
#LCSM
Why it is still important to carry out a cancer care review: treatment complications
Key takeaways: Cancer treatment can be classified into three main types: surgery, radiotherapy and SACT. Patients often under-report treatment side effects, making cancer care reviews key to identifyi...
www.linkedin.com
November 25, 2025 at 7:33 PM
People with ALK+ #lungcancer often aren’t told they can ask their GP for a Cancer Care Review.
@gatewayc.bsky.social highlights how side effects like neuropathy, weight changes & long-term bone or heart issues can be missed unless someone checks in.
www.linkedin.com/pulse/why-st...
#LCSM
@gatewayc.bsky.social highlights how side effects like neuropathy, weight changes & long-term bone or heart issues can be missed unless someone checks in.
www.linkedin.com/pulse/why-st...
#LCSM
A new US study from Pfizer, Duke Cancer Institute and @alkpositive.bsky.social looked at what matters most when choosing first-line ALK+ #LungCancer TKIs. People focused most on keeping brain mets under control. Clinicians leaned more towards PFS. Interesting to see the gap set out clearly. #LCSM
November 24, 2025 at 2:57 PM
A new US study from Pfizer, Duke Cancer Institute and @alkpositive.bsky.social looked at what matters most when choosing first-line ALK+ #LungCancer TKIs. People focused most on keeping brain mets under control. Clinicians leaned more towards PFS. Interesting to see the gap set out clearly. #LCSM
Reposted by ALK Positive Lung Cancer UK
#Lungcancer wasn’t on my radar. I had no symptoms & my RET-fusion lung cancer was found by accident while I was in treatment for breast cancer.
I also have bowel cancer - 3 primaries - which still feels surreal to say.
Read Allison’s story ➡️ www.allyouneedislungs.org.uk/2025voices/a... #LCSM
I also have bowel cancer - 3 primaries - which still feels surreal to say.
Read Allison’s story ➡️ www.allyouneedislungs.org.uk/2025voices/a... #LCSM
November 23, 2025 at 9:58 PM
#Lungcancer wasn’t on my radar. I had no symptoms & my RET-fusion lung cancer was found by accident while I was in treatment for breast cancer.
I also have bowel cancer - 3 primaries - which still feels surreal to say.
Read Allison’s story ➡️ www.allyouneedislungs.org.uk/2025voices/a... #LCSM
I also have bowel cancer - 3 primaries - which still feels surreal to say.
Read Allison’s story ➡️ www.allyouneedislungs.org.uk/2025voices/a... #LCSM
🆕 JNCCN data looks at keeping a next-gen ALK+ #lungcancer TKI going with platinum + pemetrexed after progression. Showed slightly longer time before progression & fewer new brain mets but benefit modest.
After next-gen TKIs, options are limited - we need better, more effective treatments. #LCSM
After next-gen TKIs, options are limited - we need better, more effective treatments. #LCSM
November 22, 2025 at 9:06 PM
🆕 JNCCN data looks at keeping a next-gen ALK+ #lungcancer TKI going with platinum + pemetrexed after progression. Showed slightly longer time before progression & fewer new brain mets but benefit modest.
After next-gen TKIs, options are limited - we need better, more effective treatments. #LCSM
After next-gen TKIs, options are limited - we need better, more effective treatments. #LCSM
Reposted by ALK Positive Lung Cancer UK
Week 3 & we’ve passed 1 million views! 💟
Grateful to everyone who’s shared their #lungcancer story & everyone taking the time to read, like & share to raise awareness that anyone can get lung cancer.
Read all 56 stories here ➡️
www.allyouneedislungs.org.uk/2025voices #LCSM
Grateful to everyone who’s shared their #lungcancer story & everyone taking the time to read, like & share to raise awareness that anyone can get lung cancer.
Read all 56 stories here ➡️
www.allyouneedislungs.org.uk/2025voices #LCSM
November 22, 2025 at 8:33 AM
Week 3 & we’ve passed 1 million views! 💟
Grateful to everyone who’s shared their #lungcancer story & everyone taking the time to read, like & share to raise awareness that anyone can get lung cancer.
Read all 56 stories here ➡️
www.allyouneedislungs.org.uk/2025voices #LCSM
Grateful to everyone who’s shared their #lungcancer story & everyone taking the time to read, like & share to raise awareness that anyone can get lung cancer.
Read all 56 stories here ➡️
www.allyouneedislungs.org.uk/2025voices #LCSM
A big thank you to Rene Aiken, our Northern Ireland Ambassador, for representing our ALK-positive community at the Northern Ireland Lung Cancer Conference in Belfast today.
Being at events like this helps raise awareness of ALK-positive lung cancer and the support our community needs. #LCSM
Being at events like this helps raise awareness of ALK-positive lung cancer and the support our community needs. #LCSM
November 20, 2025 at 7:07 PM
A big thank you to Rene Aiken, our Northern Ireland Ambassador, for representing our ALK-positive community at the Northern Ireland Lung Cancer Conference in Belfast today.
Being at events like this helps raise awareness of ALK-positive lung cancer and the support our community needs. #LCSM
Being at events like this helps raise awareness of ALK-positive lung cancer and the support our community needs. #LCSM
Reposted by ALK Positive Lung Cancer UK
“Too many people like me are told they’re too young, too healthy, or too unlikely to have #lungcancer and that’s how cases get missed.”
Debra, ALK+ UK Chair, shares why See Through the Symptoms is about being taken seriously, seen sooner, and diagnosed earlier.
🔗 seethroughthesymptoms.uk
#LCSM
Debra, ALK+ UK Chair, shares why See Through the Symptoms is about being taken seriously, seen sooner, and diagnosed earlier.
🔗 seethroughthesymptoms.uk
#LCSM
November 20, 2025 at 8:35 AM
“Too many people like me are told they’re too young, too healthy, or too unlikely to have #lungcancer and that’s how cases get missed.”
Debra, ALK+ UK Chair, shares why See Through the Symptoms is about being taken seriously, seen sooner, and diagnosed earlier.
🔗 seethroughthesymptoms.uk
#LCSM
Debra, ALK+ UK Chair, shares why See Through the Symptoms is about being taken seriously, seen sooner, and diagnosed earlier.
🔗 seethroughthesymptoms.uk
#LCSM
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