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)
122 posts
76 followers
121 following
Regular Contributor
Active Commenter
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But another post on the same group that discussed the possibility of using another platform rather than fb due to concerns over meta policy was deleted by moderators 2/2
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I was surprised that a fb private group that I had always found respectful and scientifically sound didn’t shut down&delete comments claiming the covid vaccine gave them cancer. Another post even discussed ivermectin- most folks scoffed at it but comments claiming it worked weren’t deleted 1/2
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It would be relatively straightforward to repeat this exercise for EGFR TKIs (assuming there is a set of TKIs that are used exclusively to treat EGFR NSCLC and no other cancers)
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This is the work of a patient advocate and interested amateur. I am no scientist!
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I use publicly available prescription data together with a set of dosage assumptions to make these estimates.
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What standard deviation value do you put on Trump/Musk tanking the global economy in the next 18 months? Could be the difference between running out of money in 40 years vs. in just 10! Good job my hair is already grey 2/2
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@dieworkwear.bsky.social - thoughts on Rupert Murdoch's shoes?
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If there's one thing the Brexiters have made clear, it is that whatever is offered is never enough. Even now, they are arguing that what we have hasn't gone far enough. The idea they would ever have been satisfied with a few more opt-outs is for the birds.
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Vaccines and ADCs also look promising. There’s a real chance of this becoming a chronic condition. Don’t know if it will be in time for me, but I reckon for those just diagnosed it will be.
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When I was diagnosed, all the talk was of Turning Point Therapeutics TPX-0131 4th generation TKI. That came to nothing during the trial. I have learned to be positive, but also have a healthy scepticism about early stage drug development. Nuvalent’s NVL-655 is I hope past the scepticism stage.
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Good to hear. Now is the best time to be diagnosed with lung cancer. Just like it was the best time 5 years ago for me, and despite the science denialists in control of the US right now, 5 years from now will be better. The long slow curve of progress (in all its terms) is unstoppable. Stay positive
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Have you figured how you will get a replacement into the same space?
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Socket set and screwdrivers. From (bitter) experience these things are easy to take apart - they are much harder to re-assemble, but in your case that's not a problem.
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As someone who is partial to a glass of wine (or three!), I don't mind the nickname 🍷
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Yeah Luigi is pretty famous over here as well!
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of course a lot of people would say the US has death panels as well, you just call them health insurance companies.
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... but bad in that a drug that is expensive and doesn't add much QALY is unlikely to be certified. Which means certain drugs that might give cancer patients a few extra months might not be available. The difference is not great though. For my own type of lung cancer (ALK+) there are none of note.
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NICE assess treatments based on typical clinical metrics like QALYs (Quality of Life Years), but also and different from the FDA they will assess against value for money. This is good and bad in that it encourages the pharmas to price their drugs to get certified...
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ofc I've describe the upside of our system. The downside is oncologists have less flexibility in how they treat. They are obliged so follow guidelines laid down by NICE (National Institute of Health & Care Excellence). NICE is what certain parts of the US media would refer to as our "death panels"
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And of course, cost to me is £0, apart from the taxes I paid when working.
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I get 2 months worth of my general meds on each prescription and 28 days worth of my SACT meds, unless I’m going on a long holiday, then they will send me more.
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So complex! Meanwhile in my so called “socialist” healthcare system in the UK, I order all my meds that my local Dr (what we would call a GP - General Practitioner) can prescribe on an app on my phone and they are posted to me. For my SACT meds, after blood tests they are also couriered to my door.
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To be clear… this was an 18yo with lung cancer. A non-smoker. This is not just a disease of elderly smokers. The stigma *has* to end.
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Have you come across this service?
www.christie.nhs.uk/patients-and...
The hospice I have my bloods taken in is about the same travel time for me as The Christie, but the difference is I am in and out in about 5 minutes rather than waiting sometimes over an hour at The Christie itself.
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I try to relive my love of trailblazing German synth music;
MRI: Beep beep beep beep;
Me: She's a model and she's looking good
MRI: Thunk thunk thunk thunk
Me: Trans Europe Express; Trans Europe Express
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Exactly this. Here is a study that suggests the common antihistamine Loratadine can effect improvements in lung cancer outcomes…
jeccr.biomedcentral.com/articles/10....
But I’d never suggest that hay fever pills cure cancer! Not least cos the study’s authors admit they don’t fully understand why.
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Well my kidnappers are screwed, but I suspect I am as well.
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Lost a member of my support group this week. She was way younger than me and had young kids too. Needed to let something out.
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Self referral chest x-rays are likely to become a thing in the NHS in the next year or so (it’s already been piloted in a few regions). But the cost of an x-ray is <1/10th the cost of a CT
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Get a GP or consultant to refer you for one - what would you expect? For me the issue isn’t that people should be able to self-refer - the issue is that clinicians set the bar too high for deciding to get a scan. In my view this is mainly an education issue
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If I had progression, I would probably be back to talking with my oncologist at least once a month, but right now there's no need to. My nurse can handle anything regarding side effects and is empowered to prescribe my medication.
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I've been with the same oncologist for over 5 years. He's just right for me - very neutral and willing to explain his thinking. My nurse is like a family friend and is always willing to talk to me whenever I have something I'm concerned about. A good medical team is so important.
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Cos I had a full response to the targeted therapy (i.e. the scans cannot pick up any visible tumours atm) I speak to my oncologist about once a quarter after my scans. I do, though speak to my Clinical Nurse Specialist every month (this is a UK specialist nursing position with cancer expertise)
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Merry Christmas!