Being a typical Brit, I self medicate scanxiety with alcohol 🥴

Good read. "You are not a statistic" is the one I tell all newly diagnosed patients. The other one for me is "focus on what you can control". Some things are just in our clinicians' hands. Sure, we can advocate, but let the experts worry, and we can just fix the things that are within our purview.

Um, well it stops them getting worse. It does help a little running a line of glue along the split. doesn’t get rid of them. Still have to keep nails trimmed short and file them 2x a week.
Obviously looks a bit weird with a line of glue on though, but I’m not brave enough to cover up with varnish!

lol - there aren’t many 50-something men that use loads of this - I get through about 2-3 bottles a year!

My hospital screwed up my appointments completely. I had my chest CT and got results (stable - yay!) before Christmas... I still don't even have a date for my head MRI, and it's over a month late now.😓

I do appreciate the privileged position I am in, which means that, as we don't have children and I have earned an excellent wage for many years, I can retire early. Not everyone is in this lucky position, but I'm sure not going to feel guilty about it either!

Rich is being careful there not to piss off the IT nerds! Where would he be without us?

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

Now the hard work of execution begins.

/ends

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

As far as I am aware, this is the first metastatic strategy developed across the whole of the NHS.

5/n

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

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

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

Please don't poke Charlie's muse - it has a horrible habit of predicting real-life grimdark outcomes!

oops and forgot to mention - the drug is Neladalkib (previously known as NVL-655) and the trial is ALKOVE-1.

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

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

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