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
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
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