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Duncan Edmonstone

@edmonstone.net
135 followers 322 following 358 posts

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)

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Duncan Edmonstone @edmonstone.net · 22/09/2026
An excellent summary of the latest CROWN study results. 7 years in, Lorlatinib still hasn't reached median PFS (the point at which 50% of patients in the Lorlatinib arm of the trial have progressed). alknowledge.org/latest-news/...
alknowledge.org
Latest News - ALK
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Duncan Edmonstone @edmonstone.net · 21/09/2026
This seems like the sort of thing @doctorow.pluralistic.net likes to talk about. The UK should follow France's lead and start the long (painful) process of regaining our digital sovereignty.
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Duncan Edmonstone @edmonstone.net · 02/09/2026
Without saying your age, what is your favourite movie that came out when you were 20 years old?
static.klipy.com
Sean Connery: Your Conclusions Were All Wrong
Alt: Sean Connery: Your Conclusions Were All Wrong
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Duncan Edmonstone @edmonstone.net · 25/08/2026
I'm doing my 5th and my wife is doing her 6th Walk of Hope for The Christie Charity - which raises funds for the world-famous Christie Cancer Hospital in Manchester. Please consider a donation! www.justgiving.com/page/duncan-....
justgiving.com
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Reposted by Duncan Edmonstone
Sid Sadler @sadlersnaps.bsky.social · 25/08/2026
When someone asks how I got involved in advocacy. #Cansky
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Duncan Edmonstone @edmonstone.net · 01/08/2026
It’s World Lung Cancer Day 2026. It’s also exactly 7 years since I had surgery to remove a metastatic tumour from my brain caused by my own lung cancer. I got this rather fetching scar! 1/n
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Duncan Edmonstone @edmonstone.net · 30/07/2026
This came to my attention the other day. It’s not just Kalshi doing this, but Polymarket as well. www.theguardian.com/technology/2... 1/n
theguardian.com
Kalshi to offer betting on drug trial results and FDA regulatory decisions
Move comes as prediction platforms rapidly gain popularity and offer opportunities to bet on virtually anything
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Reposted by Duncan Edmonstone
Sid Sadler @sadlersnaps.bsky.social · 11/07/2026
Hey #Cansky ! If you didn’t know, now, we have a group message for members! We have 15 people in there now, and you can have up to 50! Looking to hopefully add more and more members so we can make this more of a community!🫶🏻 bsky.app/chat/itzxP7o
bsky.app
CanSky 🫶🏻
15/50
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Duncan Edmonstone @edmonstone.net · 06/07/2026
Who's this fella with his mug all over this Roy Castle Lung Cancer Foundation booklet on lung cancer with brain mets? roycastle.org/wp-content/u...
roycastle.org
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Duncan Edmonstone @edmonstone.net · 22/06/2026
Sid's trying to build a little cancer patient/carer community here on BlueSky - why not join? #cansky #cancer
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Duncan Edmonstone @edmonstone.net · 12/06/2026
RIP DH.
A painting of the artist David Hockney sat in an office chair wearing his signature flat cap, cigarette in hand, with a glass of red wine on the table next to him. One of his paintings of his daschunds hangs in the background.
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Duncan Edmonstone @edmonstone.net · 05/06/2026
I’m not really one for bucket lists, but if I was, seeing the godfathers of electronic music, Kraftwerk at the Royal Albert Hall would have been right up there. Absolutely amazing show. Can I go again please?
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Duncan Edmonstone @edmonstone.net · 27/05/2026
@herring1967.bsky.social spotted as part of an exhibition of Andy Hollingworth photos of comedians in Birmingham
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Duncan Edmonstone @edmonstone.net · 13/05/2026
Won an award at the Greater Manchester Cancer Alliance Awards - this was the Patient's Choice award for the work I do as a patient advocate for the alliance. I don't care too much about recognition, but it is nice to know you are making a difference, however small. #GMCancerAwards26
Photograph of me (Duncan Edmonstone) accepting the Patient Choice award at the GM Cancer Alliance Awards 2026. Also in the photograph are two members of the Alliance's User Involvement team and the events host, comedian John Thomson
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Duncan Edmonstone @edmonstone.net · 20/04/2026
Loaf rating ~8/10
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Duncan Edmonstone @edmonstone.net · 09/04/2026
A huge frustration for me as a non-US cancer patient. Clinicaltrials.gov *only* covers trials that have at least one US location. To see trials local to me (in the UK), I have to search and de-dupe through a numbers of sites… 1/n
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Duncan Edmonstone @edmonstone.net · 07/04/2026
I recently took part in a podcast with the Roy Castle Lung Cancer Foundation, discussing precision medicine from a patient’s perspective with Dr Andrew Gilligan and Rachel Avery: roycastle.org/our-support/...
roycastle.org
Lung Cancer Podcast | Roy Castle
Talk of Hope is a lung cancer podcast sharing real stories and expert advice. Listen to episodes on diagnosis, treatment, and living with lung cancer.
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Reposted by Duncan Edmonstone
National Lung Cancer Audit @nlca-natcan.bsky.social · 07/04/2026
📣 The April NLCA Newsletter is here! This month features the recently published State of the Nation report 2026, the upcoming April Data Dashboard, and engagement activities including our latest blog, conference participation and upcoming podcast.  👉 Read here: buff.ly/4uAhrxe @btog.bsky.social
natcan.org.uk
NLCA Newsletter, April 2026 - National Cancer Audit Collaborating Centre
We use some essential cookies to make this website work.
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Duncan Edmonstone @edmonstone.net · 22/03/2026
Well worth a read to help people understand what it is to live with stage 4 cancer. The "liminal" state of neither dying nor truly being able to just get on with life. If you want to know how I live my life, read this. www.theguardian.com/society/2026...
theguardian.com
I have stage four cancer – there will be no cure, but death isn’t necessarily imminent: this is how it feels to live in the long middle
When you are cured, the world cheers; when you are dying, it mourns. But when you are simply maintaining, the world is at a loss
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Duncan Edmonstone @edmonstone.net · 05/02/2026
Simple rule of social media No127 Anyone referring to themselves as a "Digital Creator" has nothing of value to say and can be safely ignored.
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Duncan Edmonstone @edmonstone.net · 05/02/2026
Can't believe I was too busy doing cancer patient advocacy stuff yesterday to notice it was world cancer day 🤷‍♂️
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Duncan Edmonstone @edmonstone.net · 02/02/2026
I chatted with a PR lady from The Christie Hospital a while ago. They wrote up a piece, and a national newspaper has picked it up. It's good to get our stories out there! www.express.co.uk/life-style/h...
express.co.uk
'Miracle NHS drug made my incurable stage 4 lung and brain cancer vanish'
EXCLUSIVE: Duncan feared the worst when told he had stage 4 lung cancer that had already spread to his brain.
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Duncan Edmonstone @edmonstone.net · 19/01/2026
Spent Friday attending @gmcanceracademy.bsky.social Genomics Education Event. Spoke on a patient panel, and presented a patient’s view of liquid biopsies. Very informative!
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Duncan Edmonstone @edmonstone.net · 04/01/2026
Part 3, the last part of my interview with @yvonnediaz.bsky.social of @oncogenecancer.bsky.social We discuss brain mets, brain surgery, and their implications for driving in the UK. We also talked about returning to work and then adjusting my life so I can stop working. youtu.be/yIWw0U2yg5c?...
youtu.be
Duncan on brain surgery, work and redefining life with advanced lung #cancer | #podcast
YouTube video by Oncogene Cancer Research
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Duncan Edmonstone @edmonstone.net · 09/12/2025
I don’t know if it’s just me, but I find I am able to “Live, Laugh, Love” without requiring a reminder to do so painted on one of the walls in my home.
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Duncan Edmonstone @edmonstone.net · 07/12/2025
The 2nd part of my interview with @yvonnediaz.bsky.social of @oncogenecancer.bsky.social In this part, I discuss my advocacy work, especially my work with Greater Manchester Cancer Alliance. We also talk about who inspired me to become a patient advocate, Cameron Millar youtu.be/8wRLznxVN0U 1/2
youtu.be
Duncan never saw lung #cancer coming. Now he's fighting to change the system. | #podcast
YouTube video by Oncogene Cancer Research
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Duncan Edmonstone @edmonstone.net · 27/11/2025
Last night I attended the launch of the Greater Manchester Cancer Alliance Metastatic Strategy. Metastatic patients often “fall through the cracks” between healthcare teams or experience poor communication from those teams. 1/n
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Duncan Edmonstone @edmonstone.net · 22/11/2025
I suppose we should be concerned about a concentration of newspapers all in the hands of one very rich person, but TBH the DT has been pretty much indistinguishable from the DM for a good few years now www.theguardian.com/media/2025/n...
theguardian.com
Daily Mail owner strikes £500m deal to buy Telegraph titles
Acquisition likely to trigger indepth investigation by regulator after agreement between DMGT and Redbird IMI
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Duncan Edmonstone @edmonstone.net · 17/11/2025
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% 1/n
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Duncan Edmonstone @edmonstone.net · 12/11/2025
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.
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Duncan Edmonstone @edmonstone.net · 08/11/2025
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...
jtocrr.org
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...
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Duncan Edmonstone @edmonstone.net · 04/11/2025
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.
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Duncan Edmonstone @edmonstone.net · 26/10/2025
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?...
youtu.be
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
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Duncan Edmonstone @edmonstone.net · 17/10/2025
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
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Duncan Edmonstone @edmonstone.net · 17/10/2025
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!
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Reposted by Duncan Edmonstone
Lung Cancer Nursing UK @lcnuk.bsky.social · 13/10/2025
The new ALKnowledge site is live – an expert-led, interactive resource on ALK+ lung cancer for patients and professionals. Visit now 🌐 alknowledge.org
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Duncan Edmonstone @edmonstone.net · 07/09/2025
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...
justgiving.com
Kay & Duncan’s fundraiser for THE CHRISTIE CHARITY
Help Kay Edmonstone raise money to support THE CHRISTIE CHARITY
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Duncan Edmonstone @edmonstone.net · 02/08/2025
@herring1967.bsky.social
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Duncan Edmonstone @edmonstone.net · 01/08/2025
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
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Duncan Edmonstone @edmonstone.net · 30/07/2025
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...
bbc.com
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.
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Duncan Edmonstone @edmonstone.net · 02/07/2025
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
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Duncan Edmonstone @edmonstone.net · 30/06/2025
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
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Duncan Edmonstone @edmonstone.net · 10/06/2025
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
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.
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Duncan Edmonstone @edmonstone.net · 10/06/2025
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
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...
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Duncan Edmonstone @edmonstone.net · 08/05/2025
Overlooked for the papacy *again*. So unlucky… it feels like those cardinals really have that gig sewn up.
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Duncan Edmonstone @edmonstone.net · 24/04/2025
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.
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Duncan Edmonstone @edmonstone.net · 23/04/2025
Well everyone else is doing it, so... how I arrived on BlueSky
A fire truck which is itself, on fire
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Duncan Edmonstone @edmonstone.net · 23/04/2025
Heading into London to represent lung cancer patients at the National Cancer Audit's Quality Improvement event. Had to run for my train and now my muscles and lungs are telling me I really shouldn't have done. The life of a lung cancer patient! #LCSM #CANSKY
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Duncan Edmonstone @edmonstone.net · 22/04/2025
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...
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Duncan Edmonstone @edmonstone.net · 21/04/2025
<sigh> Brexit - the gift that keeps on giving www.theguardian.com/science/2025...
theguardian.com
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
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