Duncan Edmonstone
@edmonstone.net
UK-based lung cancer patient advocate. Used to work in IT. Progressive.
(Don’t try and visit edmonstone.net there’s nothing there right now)
(Don’t try and visit edmonstone.net there’s nothing there right now)
Positive news emerging about Nuvalent's 4G TKI for ALK+ NSCLC patients. Latest trial result show 31% of all patients had a complete or partial response (many of these were heavily pre-treated with other TKIs and chemo). For patients who never received Lorlatinib this increased to 46%
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November 17, 2025 at 9:03 PM
Positive news emerging about Nuvalent's 4G TKI for ALK+ NSCLC patients. Latest trial result show 31% of all patients had a complete or partial response (many of these were heavily pre-treated with other TKIs and chemo). For patients who never received Lorlatinib this increased to 46%
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A fantastic paper to help patients like me understand the science behind ALK+ Lung Cancer and its treatments.
onlinelibrary.wiley.com/doi/10.1111/...
Elena isn't just a Professor of Molecular Oncology, she is also an ALK+ patient. Whenever I speak with her, I learn something new about my disease.
onlinelibrary.wiley.com/doi/10.1111/...
Elena isn't just a Professor of Molecular Oncology, she is also an ALK+ patient. Whenever I speak with her, I learn something new about my disease.
November 12, 2025 at 3:11 PM
A fantastic paper to help patients like me understand the science behind ALK+ Lung Cancer and its treatments.
onlinelibrary.wiley.com/doi/10.1111/...
Elena isn't just a Professor of Molecular Oncology, she is also an ALK+ patient. Whenever I speak with her, I learn something new about my disease.
onlinelibrary.wiley.com/doi/10.1111/...
Elena isn't just a Professor of Molecular Oncology, she is also an ALK+ patient. Whenever I speak with her, I learn something new about my disease.
Fascinating meta-study on the risk factors for lung cancer in never-smokers. I'll want to discuss this with the GM Cancer Alliance early detection & diagnosis group I am part of:
www.jtocrr.org/article/S266...
www.jtocrr.org/article/S266...
Risk Factors Associated With Incidence of Lung Cancer in Never-Smokers: A Systematic Review and Meta-Analysis
Lung cancer is the leading cause of cancer mortality globally. Although often associated
with smoking, up to 25% of cases worldwide and 50% in East Asia occur in “never-smokers.”
There are currently n...
www.jtocrr.org
November 8, 2025 at 3:47 PM
Fascinating meta-study on the risk factors for lung cancer in never-smokers. I'll want to discuss this with the GM Cancer Alliance early detection & diagnosis group I am part of:
www.jtocrr.org/article/S266...
www.jtocrr.org/article/S266...
A great little resource for explaining pleural effusions to cancer patients and carers
mypleuraleffusionjourney.com
mypleuraleffusionjourney.com
Welcome to ‘My Pleural Effusion Journey’
My Pleural Effusion Journey and the information contained within it has been written by healthcare professionals, patients and carers.
mypleuraleffusionjourney.com
November 4, 2025 at 5:15 PM
A great little resource for explaining pleural effusions to cancer patients and carers
mypleuraleffusionjourney.com
mypleuraleffusionjourney.com
I was honoured to spend a few hours recently talking with
@yvonnediaz.bsky.social from @oncogenecancer.bsky.social
about my lung cancer experiences. This first part is about my initial diagnosis and the start of my treatment. More to come shortly! youtu.be/FZsbfkloPyM?...
@yvonnediaz.bsky.social from @oncogenecancer.bsky.social
about my lung cancer experiences. This first part is about my initial diagnosis and the start of my treatment. More to come shortly! youtu.be/FZsbfkloPyM?...
Duncan was 49, healthy. One day he had a seizure after work. It was stage 4 lung #cancer | #podcast
YouTube video by Oncogene Cancer Research
youtu.be
October 26, 2025 at 5:18 PM
I was honoured to spend a few hours recently talking with
@yvonnediaz.bsky.social from @oncogenecancer.bsky.social
about my lung cancer experiences. This first part is about my initial diagnosis and the start of my treatment. More to come shortly! youtu.be/FZsbfkloPyM?...
@yvonnediaz.bsky.social from @oncogenecancer.bsky.social
about my lung cancer experiences. This first part is about my initial diagnosis and the start of my treatment. More to come shortly! youtu.be/FZsbfkloPyM?...
Amazing mOS figures from the final trial report of the drug I happen to take... and there are better drugs on the market now and in phase 3 trials. Reassuring to know how fast treatments are improving in the ALK+ NSCLC space #LCSM #CANSKY
October 17, 2025 at 3:40 PM
Sigh... suspended from Facebook by their dumb AI algorithm
No big deal right?
For me, it cuts me off from all of my cancer support groups, hosted on the platform.
Can't contact anyone directly at Meta to appeal... "services" to help you get your account back are scammers... not my first rodeo!
No big deal right?
For me, it cuts me off from all of my cancer support groups, hosted on the platform.
Can't contact anyone directly at Meta to appeal... "services" to help you get your account back are scammers... not my first rodeo!
October 17, 2025 at 10:22 AM
Sigh... suspended from Facebook by their dumb AI algorithm
No big deal right?
For me, it cuts me off from all of my cancer support groups, hosted on the platform.
Can't contact anyone directly at Meta to appeal... "services" to help you get your account back are scammers... not my first rodeo!
No big deal right?
For me, it cuts me off from all of my cancer support groups, hosted on the platform.
Can't contact anyone directly at Meta to appeal... "services" to help you get your account back are scammers... not my first rodeo!
Reposted by Duncan Edmonstone
The new ALKnowledge site is live – an expert-led, interactive resource on ALK+ lung cancer for patients and professionals.
Visit now 🌐 alknowledge.org
Visit now 🌐 alknowledge.org
October 13, 2025 at 3:17 PM
The new ALKnowledge site is live – an expert-led, interactive resource on ALK+ lung cancer for patients and professionals.
Visit now 🌐 alknowledge.org
Visit now 🌐 alknowledge.org
After a 2-year break where the walk clashed with other happenings, we are doing the Walk of Hope for The Christie Charity this year. No pressure, but if you can spare a little, it's a very worthy cause. I wouldn't be here today without this excellent hospital!
www.justgiving.com/page/kay-edm...
www.justgiving.com/page/kay-edm...
Kay & Duncan’s fundraiser for THE CHRISTIE CHARITY
Help Kay Edmonstone raise money to support THE CHRISTIE CHARITY
www.justgiving.com
September 7, 2025 at 7:05 PM
After a 2-year break where the walk clashed with other happenings, we are doing the Walk of Hope for The Christie Charity this year. No pressure, but if you can spare a little, it's a very worthy cause. I wouldn't be here today without this excellent hospital!
www.justgiving.com/page/kay-edm...
www.justgiving.com/page/kay-edm...
Just putting down this marker. At some point in the near future, some right wing edgelord will bring back the Hitler moustache
August 2, 2025 at 10:40 AM
Important things about today:
1. It’s our wedding anniversary- 27 years of wedded bliss!
2. It’s exactly 6 years since I went under the knife for brain surgery to remove a golf ball size tumour. Have a close look at my avatar photo for the results of that!
3. It’s World Lung Cancer day
1. It’s our wedding anniversary- 27 years of wedded bliss!
2. It’s exactly 6 years since I went under the knife for brain surgery to remove a golf ball size tumour. Have a close look at my avatar photo for the results of that!
3. It’s World Lung Cancer day
August 1, 2025 at 10:24 AM
Important things about today:
1. It’s our wedding anniversary- 27 years of wedded bliss!
2. It’s exactly 6 years since I went under the knife for brain surgery to remove a golf ball size tumour. Have a close look at my avatar photo for the results of that!
3. It’s World Lung Cancer day
1. It’s our wedding anniversary- 27 years of wedded bliss!
2. It’s exactly 6 years since I went under the knife for brain surgery to remove a golf ball size tumour. Have a close look at my avatar photo for the results of that!
3. It’s World Lung Cancer day
These sorts of stories make me so mad. There’s no simpler way of saying it, relying solely on “alternative medicine” kills people. By all
Means have your “coffee enemas” if it makes you feel good, but have it as well as, not instead of your chemotherapy.
www.bbc.com/news/article...
Means have your “coffee enemas” if it makes you feel good, but have it as well as, not instead of your chemotherapy.
www.bbc.com/news/article...
Woman who died after refusing chemo had daily coffee enemas
Paloma Shemirani's brothers blame their mother's anti-medicine conspiracy theories for her death.
www.bbc.com
July 30, 2025 at 11:38 AM
These sorts of stories make me so mad. There’s no simpler way of saying it, relying solely on “alternative medicine” kills people. By all
Means have your “coffee enemas” if it makes you feel good, but have it as well as, not instead of your chemotherapy.
www.bbc.com/news/article...
Means have your “coffee enemas” if it makes you feel good, but have it as well as, not instead of your chemotherapy.
www.bbc.com/news/article...
Today is 6 years since a Dr in A&E (ER for those in US) told me “you have 2 legions in your lungs, and 1 in your head that caused the seizure - we won’t know until more tests are done, but it looks like lung cancer”. This photo was taken 4 days later after I got out of hospital. 1/2
July 2, 2025 at 7:13 AM
Today is 6 years since a Dr in A&E (ER for those in US) told me “you have 2 legions in your lungs, and 1 in your head that caused the seizure - we won’t know until more tests are done, but it looks like lung cancer”. This photo was taken 4 days later after I got out of hospital. 1/2
Well, I’m in Facebook jail. Of course I haven’t done what I am accused of (breaking Meta’s cybersecurity guidelines), but it doesn’t seem to matter… 1/n
June 30, 2025 at 10:36 AM
Well, I’m in Facebook jail. Of course I haven’t done what I am accused of (breaking Meta’s cybersecurity guidelines), but it doesn’t seem to matter… 1/n
Little project I did to estimate the # of ALK-positive non-small-cell lung cancer patients on targeted therapy at all NHS Trusts in England:
lookerstudio.google.com/s/gRVht58B0jg
lookerstudio.google.com/s/gRVht58B0jg
Estimated ALK+ Patients on TKIs in England start of 2025 by NHS Trust
Looker Studio turns your data into informative dashboards and reports that are easy to read, easy to share, and fully customizable.
lookerstudio.google.com
June 10, 2025 at 11:35 AM
Little project I did to estimate the # of ALK-positive non-small-cell lung cancer patients on targeted therapy at all NHS Trusts in England:
lookerstudio.google.com/s/gRVht58B0jg
lookerstudio.google.com/s/gRVht58B0jg
I’m increasingly convinced that the future of a cancer screening is ultra-sensitive ctDNA tests. If the cost of the assay technology can come down to a reasonable level where tests cost say < $100, it becomes possible and meaningful to screen whole populations:
aacrjournals.org/cancerdiscov...
aacrjournals.org/cancerdiscov...
Detection of cancers three years prior to diagnosis using plasma cell-free DNA
Abstract. To explore how early can cancers be detected prior to clinical signs or symptoms, we assessed prospectively collected serial plasma samples from the Atherosclerosis Risk in Communities (ARIC...
aacrjournals.org
June 10, 2025 at 6:30 AM
I’m increasingly convinced that the future of a cancer screening is ultra-sensitive ctDNA tests. If the cost of the assay technology can come down to a reasonable level where tests cost say < $100, it becomes possible and meaningful to screen whole populations:
aacrjournals.org/cancerdiscov...
aacrjournals.org/cancerdiscov...
Overlooked for the papacy *again*. So unlucky… it feels like those cardinals really have that gig sewn up.
May 8, 2025 at 6:52 PM
Overlooked for the papacy *again*. So unlucky… it feels like those cardinals really have that gig sewn up.
Yesterday I attended a Quality Improvement event at @natcan-news.bsky.social
Much was learned about some exciting initiatives that will improve the quality of the various cancer audits under NATCAN's purview, and some that will lead to real differences in patient outcomes.
Much was learned about some exciting initiatives that will improve the quality of the various cancer audits under NATCAN's purview, and some that will lead to real differences in patient outcomes.
April 24, 2025 at 2:18 PM
Yesterday I attended a Quality Improvement event at @natcan-news.bsky.social
Much was learned about some exciting initiatives that will improve the quality of the various cancer audits under NATCAN's purview, and some that will lead to real differences in patient outcomes.
Much was learned about some exciting initiatives that will improve the quality of the various cancer audits under NATCAN's purview, and some that will lead to real differences in patient outcomes.
Well everyone else is doing it, so... how I arrived on BlueSky
April 23, 2025 at 8:24 AM
Well everyone else is doing it, so... how I arrived on BlueSky
Interesting review of the current state of liquid biopsies in treating cancer. Both current use-cases and potential future ones. The language is bit heavy for a layman, but you can still get the gist:
www.journalofliquidbiopsy.com/article/S295...
www.journalofliquidbiopsy.com/article/S295...
April 22, 2025 at 6:55 AM
Interesting review of the current state of liquid biopsies in treating cancer. Both current use-cases and potential future ones. The language is bit heavy for a layman, but you can still get the gist:
www.journalofliquidbiopsy.com/article/S295...
www.journalofliquidbiopsy.com/article/S295...
www.theguardian.com/science/2025...
NHS cancer patients denied life-saving drugs due to Brexit costs, report finds
Exclusive: Britons found to have ‘lost out’ while rest of Europe benefits from golden age of research and treatments
www.theguardian.com
April 21, 2025 at 8:26 AM
www.theguardian.com/science/2025...
Connections between the PM2.5 particulates from wood-burning stoves and non-smoking lung cancer? Who knows for sure, but it's always useful to see a bit more data:
www.theguardian.com/environment/...
storymaps.arcgis.com/stories/9231...
www.theguardian.com/environment/...
storymaps.arcgis.com/stories/9231...
Map reveals residential wood-burning hotspots in England and Wales
Researchers analyse energy performance certificate data to identify areas with potentially high particle pollution
www.theguardian.com
April 18, 2025 at 10:13 AM
Connections between the PM2.5 particulates from wood-burning stoves and non-smoking lung cancer? Who knows for sure, but it's always useful to see a bit more data:
www.theguardian.com/environment/...
storymaps.arcgis.com/stories/9231...
www.theguardian.com/environment/...
storymaps.arcgis.com/stories/9231...
I think (hope) this a data issue (how it is collected or used to calculate these stats.)
If not, this says oncs are either not reading the biomarker section of biopsy reports, or reading it but deciding "no, I won't follow the NICE guidance for ALK+ patients".
And that would be incredibly bad.
If not, this says oncs are either not reading the biomarker section of biopsy reports, or reading it but deciding "no, I won't follow the NICE guidance for ALK+ patients".
And that would be incredibly bad.
Only 45% of eligible ALK+ #lungcancer patients in England got targeted treatment.
People well enough to benefit didn’t get the drugs they needed. This isn’t good enough. #LCSM
www.lungcanceraudit.org.uk/wp-content/u...
People well enough to benefit didn’t get the drugs they needed. This isn’t good enough. #LCSM
www.lungcanceraudit.org.uk/wp-content/u...
April 10, 2025 at 1:50 PM
I think (hope) this a data issue (how it is collected or used to calculate these stats.)
If not, this says oncs are either not reading the biomarker section of biopsy reports, or reading it but deciding "no, I won't follow the NICE guidance for ALK+ patients".
And that would be incredibly bad.
If not, this says oncs are either not reading the biomarker section of biopsy reports, or reading it but deciding "no, I won't follow the NICE guidance for ALK+ patients".
And that would be incredibly bad.
I'm 55 in May and as someone with a high likelihood of a much reduced lifespan (thanks cancer), I was planning to start taking a little out of my pension. Might put that off a little longer now (thanks President Cheetos)
April 3, 2025 at 8:19 PM
I'm 55 in May and as someone with a high likelihood of a much reduced lifespan (thanks cancer), I was planning to start taking a little out of my pension. Might put that off a little longer now (thanks President Cheetos)