Duncan Edmonstone

It's National #BlackCatDay - so here's a photo of our boy Perseus lording it over us!

The Japanese Acer in our garden is just about to turn and give us its usual fantastic seasonal display. I’ll post another photo of it in a couple of weeks and the difference will be dramatic #autumn #fall

@adriansdigitalbasement.com - thought this one might make you smile, Adrian!

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<sigh> Screw this godawful disease. No god in heaven could be so cruel.

alknowledge.orgLatest News - ALK

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/...

For example, some clinicians can be quite casual about the weight gain associated with Lorlatinib, but if you are living many years longer, quality-of-life issues like this become much more important for patients.

We already see quite a few patients tipping over from pre-diabetic to diabetic. More needs to be done!

alknowledge.orgLatest News - ALK

Further, those who get past the first two years of treatment are highly likely to get many more years on Lorlatinib after that. What I'm keen to see more of from clinicians is continued acknowledgement of, and new ways to manage, some of the more severe Lorlatinib side effects.

21 Sept

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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2 Sept

Without saying your age, what is your favourite movie that came out when you were 20 years old?

Margot Foley@mfoley25.bsky.social

Without saying your age, what is your favorite movie that came out when you were 20 years old?

justgiving.comjustgiving.com

25 Aug

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-....

25 Aug

The first time Kay did it, I was still too sick to take part, so the fact that I've gone on to do it with her every year since (apart from one we couldn't make due to other cancer-related commitments) is a testament to what the Christie Hospital can do for cancer patients.

25 Aug

I simply wouldn't still be here if it weren't for this hospital and the wonderful people who work there.

oncogeneresearch.orgOncogene Cancer ResearchOncogene Cancer Research is a patient-led charity focused on oncogene-driven lung cancers. We provide resources for patients, caregivers, and clinicians on biomarker testing, targeted therapies, and r...

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

Oncogene Cancer Research: www.oncogeneresearch.org 9/n

This is the last thought I will be giving to cancer today, as I have something much more important to celebrate- today is our (me & Kay) 28th wedding anniversary! 10/10

roycastle.orgHome | Roy Castle Lung Cancer FoundationRoy Castle Lung Cancer Foundation offers expert lung cancer information, support for patients and families, and ways to donate or get involved. Together, we bring hope and improve lives.

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

I’m positive and hopeful about what the next 7 years will bring! Please consider a donation to one of these worthy charities to help improve outcomes for lung cancer: Roy Castle Lung Cancer Foundation: roycastle.org 7/n

alkpositive.org.ukSupporting Patients of ALK+ Lung Cancer | ALK Positive UKWelcome to ALK Positive UK. We are the UK's leading charity for ALK-positive lung cancer patients. We are recognised by NICE as an organisation to be...

ALK Positive Lung Cancer UK: www.alkpositive.org.uk 8/n

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

But there’s still plenty to be done. We have to get better at early diagnosis - too many patients, especially non-smoking lung cancer patients are diagnosed too late at stage 4 where we can’t currently attempt curative treatment. 5/n

Too many primary care clinicians continue to wave away symptoms that should really cause them to “think cancer”. And there are too many types of lung cancer where we don’t have targeted/personalised treatments available. 6/n

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

Advances in biopsies and analysis of fragments of tumour DNA allow us to get to accurate diagnoses faster. The NHS has also done a huge amount of work operationally to shorten the diagnostic pathway despite massive pressure on resources. 3/n

The median survival time for stage 4 patients has finally got past the 1 year mark, and many patients like myself do a whole lot better. 4/n

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

In the 7 years since my diagnosis we’ve come a long way. There is a screening program for lung cancer in England and plans under way for equivalents in the devolved nations. There’s a huge number of new treatments available for lung cancer sub-types we could hardly even detect 7 years ago. 2/n

theguardian.comKalshi to offer betting on drug trial results and FDA regulatory decisionsMove comes as prediction platforms rapidly gain popularity and offer opportunities to bet on virtually anything

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

It’s gross and any right-minded financial regulator would stop it. I won’t hold my breath for anything to happen in the US where these two companies are based though. Another example of hyper-financialisation. 3/n

Meanwhile if you have anything to do with Kalshi or Polymarket, I guess your love of money outweighs your morals. /ends

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

To say this is sickening is an understatement - these two companies can wrap their messaging up in all sorts of ways about trying to justify this through the production of accurate datasets on trial outcomes, but we all know what this actually is - betting on whether sick people live or die. 2/n

roycastle.orgroycastle.org

6 July

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...

22 June

Sid's trying to build a little cancer patient/carer community here on BlueSky - why not join? #cansky #cancer

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RIP DH.

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?

27 May

@herring1967.bsky.social spotted as part of an exhibition of Andy Hollingworth photos of comedians in Birmingham

13 May

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

Loaf rating ~8/10

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

But I have my doubts over how complete coverage will be, and really a single country model is not a sensible answer. For rarer diseases, patients will almost inevitably have to seek novel treatments internationally. Really feels like something WHO should be looking at? /ends

clinicaltrialsregister.euclinicaltrialsregister.eu

9 Apr

Addendum… or honestly any supranational health organisation!

I then also need to search clinicaltrialsregister.eu - as a UK patient, I also need to search the ISRCTN register, and the NIHR Open data portal. There are probably others I have missed… 3/n

roycastle.orgLung Cancer Podcast | Roy CastleTalk of Hope is a lung cancer podcast sharing real stories and expert advice. Listen to episodes on diagnosis, treatment, and living with lung cancer.

9 Apr

The point being it is frustrating to have to put together all these different sources of information. And I consider myself a well-informed and able patient able to advocate for myself. I am hearing that ultimately some of this may get fixed by some of the digital changes planned by the NHS… 4/n

Of course clinicaltrials.gov is where I start, and it does have an excellent search API that allows me to find recruiting trials near me, but that is just the start… 2/n

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/...

Oops my bad, it was of course Dr David Gilligan. Not sure where I got Andrew from!

roycastle.orgLung Cancer Podcast | Roy CastleTalk of Hope is a lung cancer podcast sharing real stories and expert advice. Listen to episodes on diagnosis, treatment, and living with lung cancer.

National Lung Cancer Audit

My sound quality was a bit suspect, but hopefully I was (mostly) intelligible.

Duncan Edmonstone reposted

@nlca-natcan.bsky.social

natcan.org.ukNLCA Newsletter, April 2026 - National Cancer Audit Collaborating CentreWe use some essential cookies to make this website work.

📣 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