Duncan Edmonstone
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edmonstone.net
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)
Rich is being careful there not to piss off the IT nerds! Where would he be without us?
December 17, 2025 at 3:04 PM
I also give my forthright opinion on the stigmas still associated with lung cancer and smoking.

Please find 20 minutes to watch/listen!

2/2
December 7, 2025 at 7:27 PM
Now the hard work of execution begins.

/ends
November 27, 2025 at 9:15 AM
It was good to hear @mayorofgm.bsky.social Andy Burnham speak and personally endorse the strategy, as well as honour the memory of Jo Taylor, a patient advocate and a driving force behind developing it. Sadly, Jo died a few days ago, but I hope this work will prove to be a lasting legacy.

6/n
November 27, 2025 at 9:14 AM
As far as I am aware, this is the first metastatic strategy developed across the whole of the NHS.

5/n
November 27, 2025 at 9:12 AM
The strategy puts in place a framework to help address this by embedding metastatic patients into the various cancer pathways across Greater Manchester, supporting patients through better communication, and providing better education & training for healthcare professionals.

4/n
November 27, 2025 at 9:11 AM
Healthcare systems are often geared to the needs of early-stage patients being treated with curative intent. This is vital and must continue, but advances in care/treatment mean metastatic patients are living long, fulfilling lives, and their care needs to keep up with this new normal.

3/n
November 27, 2025 at 9:11 AM
There is no system in place to consider their care holistically, and they end up doing a good deal of the work themselves - something that isn’t sustainable or even possible for many of them.

2/n
November 27, 2025 at 9:09 AM
Please don't poke Charlie's muse - it has a horrible habit of predicting real-life grimdark outcomes!
November 19, 2025 at 9:28 AM
oops and forgot to mention - the drug is Neladalkib (previously known as NVL-655) and the trial is ALKOVE-1.
November 17, 2025 at 9:14 PM
The data on tolerability also looks pretty good, but as a patient we are leary of putting too much trust in what studies say about Adverse Events. I have no doubt though that they will be preferable to the alternatives (chemo)

/ends
November 17, 2025 at 9:12 PM
While the results don't sound especially stunning, given the context that many patients on the trial will have already progressed on up to 3 other lines of TKI (and maybe chemo), they are quite compelling. This offers some real hope for those approaching the end of current treatment pathways.

3/n
November 17, 2025 at 9:11 PM
Duration of Response was still over 50% for both groups at 18 months out (53% and 60% respectively). Results were much better than this for those specifically with the G1202R mutation.

2/n
November 17, 2025 at 9:08 PM
So true - knowledge, empathy, support, sympathy all come from support groups of like-minded patients and carers. Also you get to make really dark jokes that those non-cancer folks look at you oddly for telling!
November 17, 2025 at 8:48 PM
Not just any doors... "serious" doors (whatever they are)
November 2, 2025 at 10:58 AM
Thank you - I thought that was the most likely answer. I’ve seen plenty of other study reports where another drug was used to boost immune response and increase efficacy of an ICI. No reason to think it would work for other treatment modalities. Still very interesting research!
October 23, 2025 at 6:03 AM