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
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
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
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
🆕 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
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
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
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
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
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
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
Becs Welsh, Charity Manager at ALK+ UK, was in Swansea today for the All Wales Lung Cancer Forum.
A great chance to connect with #lungcancer nurses & healthcare teams across Wales, share resources, & raise awareness of ALK-positive lung cancer.
#LCSM
A great chance to connect with #lungcancer nurses & healthcare teams across Wales, share resources, & raise awareness of ALK-positive lung cancer.
#LCSM
November 7, 2025 at 5:25 PM
Becs Welsh, Charity Manager at ALK+ UK, was in Swansea today for the All Wales Lung Cancer Forum.
A great chance to connect with #lungcancer nurses & healthcare teams across Wales, share resources, & raise awareness of ALK-positive lung cancer.
#LCSM
A great chance to connect with #lungcancer nurses & healthcare teams across Wales, share resources, & raise awareness of ALK-positive lung cancer.
#LCSM
Harriet was diagnosed with stage 4 ALK+ #lungcancer at 33 after fatigue & migraines. Now she finds balance through sound healing, meditation, & the support of those closest to her.
As members of @lungcancereurope.bsky.social we’re sharing real stories from www.getchecked.eu #LCSM
As members of @lungcancereurope.bsky.social we’re sharing real stories from www.getchecked.eu #LCSM
November 7, 2025 at 8:06 AM
Harriet was diagnosed with stage 4 ALK+ #lungcancer at 33 after fatigue & migraines. Now she finds balance through sound healing, meditation, & the support of those closest to her.
As members of @lungcancereurope.bsky.social we’re sharing real stories from www.getchecked.eu #LCSM
As members of @lungcancereurope.bsky.social we’re sharing real stories from www.getchecked.eu #LCSM
Our CEO Lynsey Conway & Treasurer Geoff Otterman represented ALK+ UK at the @cancer52org.bsky.social parliamentary reception at the House of Lords - bringing attention to rare & less common cancers & the need for stronger inclusion in the National Cancer Plan.
#LCSM #LungCancer #RareCancers
#LCSM #LungCancer #RareCancers
November 5, 2025 at 10:39 PM
Our CEO Lynsey Conway & Treasurer Geoff Otterman represented ALK+ UK at the @cancer52org.bsky.social parliamentary reception at the House of Lords - bringing attention to rare & less common cancers & the need for stronger inclusion in the National Cancer Plan.
#LCSM #LungCancer #RareCancers
#LCSM #LungCancer #RareCancers
Becs Welsh & Lynsey Conway represented ALK+ UK at the UKLCC Conference yesterday, sharing our abstract on head MRI in ALK+ #lungcancer.
It was great to be part of marking 20 years of the @uklungcancer.bsky.social and continuing the conversation on improving outcomes across the UK.
#LCSM
It was great to be part of marking 20 years of the @uklungcancer.bsky.social and continuing the conversation on improving outcomes across the UK.
#LCSM
November 5, 2025 at 7:41 AM
Becs Welsh & Lynsey Conway represented ALK+ UK at the UKLCC Conference yesterday, sharing our abstract on head MRI in ALK+ #lungcancer.
It was great to be part of marking 20 years of the @uklungcancer.bsky.social and continuing the conversation on improving outcomes across the UK.
#LCSM
It was great to be part of marking 20 years of the @uklungcancer.bsky.social and continuing the conversation on improving outcomes across the UK.
#LCSM
ALK+ UK and EGFR+ UK will be at #UKLCC2025 the today, taking part in a breakout session on mental health and wellbeing in #lungcancer.
We’ll be talking about what people really need for better emotional support and how psychological care can be built into everyday treatment. #LCSM
We’ll be talking about what people really need for better emotional support and how psychological care can be built into everyday treatment. #LCSM
November 4, 2025 at 7:41 AM
ALK+ UK and EGFR+ UK will be at #UKLCC2025 the today, taking part in a breakout session on mental health and wellbeing in #lungcancer.
We’ll be talking about what people really need for better emotional support and how psychological care can be built into everyday treatment. #LCSM
We’ll be talking about what people really need for better emotional support and how psychological care can be built into everyday treatment. #LCSM
Becca, who has stage 4 ALK+ #lungcancer, spoke on BBC Morning Live ahead of Lung Cancer Awareness Month 💙
Diagnosed nearly six years ago after back pain and vision problems, she’s helping challenge outdated ideas about who can get lung cancer.
#LungCancerAwarenessMonth #ALKPositive #LCSM
Diagnosed nearly six years ago after back pain and vision problems, she’s helping challenge outdated ideas about who can get lung cancer.
#LungCancerAwarenessMonth #ALKPositive #LCSM
October 31, 2025 at 8:35 AM
Becca, who has stage 4 ALK+ #lungcancer, spoke on BBC Morning Live ahead of Lung Cancer Awareness Month 💙
Diagnosed nearly six years ago after back pain and vision problems, she’s helping challenge outdated ideas about who can get lung cancer.
#LungCancerAwarenessMonth #ALKPositive #LCSM
Diagnosed nearly six years ago after back pain and vision problems, she’s helping challenge outdated ideas about who can get lung cancer.
#LungCancerAwarenessMonth #ALKPositive #LCSM
🆕 UK study (MEDLEY) could change how #lungcancer is diagnosed.
Researchers at the Uni of Leeds, funded by NIHR are testing whether people with lung symptoms should get a CT scan instead of a chest X-ray.
Chest X-rays can give false negatives - showing everything looks fine when it isn’t.
#LCSM
Researchers at the Uni of Leeds, funded by NIHR are testing whether people with lung symptoms should get a CT scan instead of a chest X-ray.
Chest X-rays can give false negatives - showing everything looks fine when it isn’t.
#LCSM
October 29, 2025 at 11:12 PM
🆕 UK study (MEDLEY) could change how #lungcancer is diagnosed.
Researchers at the Uni of Leeds, funded by NIHR are testing whether people with lung symptoms should get a CT scan instead of a chest X-ray.
Chest X-rays can give false negatives - showing everything looks fine when it isn’t.
#LCSM
Researchers at the Uni of Leeds, funded by NIHR are testing whether people with lung symptoms should get a CT scan instead of a chest X-ray.
Chest X-rays can give false negatives - showing everything looks fine when it isn’t.
#LCSM
Prof Sanjay Popat shares why he’s feeling so optimistic about the future of ALK+ #lungcancer treatment.
With new targeted therapies, ADCs, & entirely new drug classes like PROTACs & molecular glues in development - alongside a growing understanding of ALK biology - the field is moving fast.
#LCSM
With new targeted therapies, ADCs, & entirely new drug classes like PROTACs & molecular glues in development - alongside a growing understanding of ALK biology - the field is moving fast.
#LCSM
October 25, 2025 at 8:19 AM
Prof Sanjay Popat shares why he’s feeling so optimistic about the future of ALK+ #lungcancer treatment.
With new targeted therapies, ADCs, & entirely new drug classes like PROTACs & molecular glues in development - alongside a growing understanding of ALK biology - the field is moving fast.
#LCSM
With new targeted therapies, ADCs, & entirely new drug classes like PROTACs & molecular glues in development - alongside a growing understanding of ALK biology - the field is moving fast.
#LCSM
A major new JAMA review by Dr Catherine Murphy, Prof Ben Solomon & Prof Charles Swanton brings together global data on #lungcancer in people with no smoking history.
Around 1 in 5 cases are ALK or EGFR-driven - highlighting the need for testing at diagnosis.
#LCSM
Around 1 in 5 cases are ALK or EGFR-driven - highlighting the need for testing at diagnosis.
#LCSM
October 24, 2025 at 7:51 AM
A major new JAMA review by Dr Catherine Murphy, Prof Ben Solomon & Prof Charles Swanton brings together global data on #lungcancer in people with no smoking history.
Around 1 in 5 cases are ALK or EGFR-driven - highlighting the need for testing at diagnosis.
#LCSM
Around 1 in 5 cases are ALK or EGFR-driven - highlighting the need for testing at diagnosis.
#LCSM