HN user
jseliger
The Story's Story -- http://jakeseliger.com Grant Writing Confidential -- http://www.seliger.com/blog
E-mail: seligerj [@] gmail DOT com.
And I'm somewhat on Twitter now: @seligerj / https://twitter.com/seligerj.
I hope too to accomplish at least two concrete ends:
1. Help and educate other people who are suddenly facing the opaque clinical-trial system: https://bessstillman.substack.com/p/please-be-dying-but-not-...
2. Ultimately, reform and speed FDA approval for fatal diseases like recurrent / metastatic head and neck cancers: https://jakeseliger.com/2024/01/29/the-dead-and-dying-at-the.... A drug like petosemtamab (MCLA-158), which I was on from Sept. 27 2023 to March 29 2024, should already be approved, instead of continuing to wander around in clinical trials.
Hacker News, thank you for all the links and all the great reading. Now I have to say goodbye.
I’m with my wife Bess (https://bessstillman.substack.com/) and my brother Sam, and crying, but it is okay. At the end of Lord of the Rings Gandalf says to the hobbits, "Go in peace! I will not say: do not weep; for not all tears are an evil.” And that is how I feel now. Ending prematurely hurts, but all things must end, and my time to end is upon me.
I'm dying of cancer and hope my wife finds love again: https://jakeseliger.com/2023/08/30/turning-two-lives-into-on...
They'll try absolutely anything except for building more housing: https://www.mcsweeneys.net/articles/i-will-do-anything-to-en...
Meanwhile, metros like Austin permit lots of housing to be constructed, and you won't believe what happens next! https://www.theatlantic.com/ideas/archive/2024/03/austin-tex...
Likely submitted due to patio11 being on Dwarkesh: https://www.dwarkeshpatel.com/p/patrick-mckenzie
One big takeaway, I think, is that expertise and ability are highly unevenly distributed, including within institutions: https://jakeseliger.com/2024/01/11/on-not-being-a-radical-me...
My wife and I use a countertop induction stove called a Breville Control Freak, and, apart from the name it's incredible. Way better than legacy gas or electric stoves.
Every day feels like prison
Dying from cancer makes me feel that way too: https://news.ycombinator.com/context?id=40970295 In my case, I can't really speak any more. Until mid-June I could eat pureed foods, and now I can't even do that.
You only live once. Make some changes. Deepen friendships. Focus on romantic partner. Life is not about you, it's about the people you're with and who are around you.
The biggest question in oncology today is whether this approach could also be used for solid tumors
Yeah. I'm dying of a squamous cell carcinoma infestation: https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce... and the most recent clinical trial drug that was working, has stopped working: https://jakeseliger.com/2024/05/20/in-which-the-antibody-dru....
One of the options for a next trial is from TScan, "A Basket Study of Customized Autologous TCR-T Cell Therapies." https://www.clinicaltrials.gov/study/NCT05973487?term=tscan0.... On the one hand, it looks very promising; on the other hand, lots of promising treatments fail during dose-escalation, first-in-human trials. To my knowledge, the first humans dosed with TScan's TCR-T therapy got it a few months ago.
I got lucky, too, in that a slot for BGB-A3055 with Tislelizumab, an immunotherapy drug and trial, opened up at NEXT Oncology-Dallas: https://clinicaltrials.gov/study/NCT05935098?term=BGB-A3055&.... One challenge, however, is that I received a bispecific antibody called petosemtamab from Sept 2023 to March 2024, then PDL1V (an antibody drug conjugate), and they're considered immunotherapies, so there's a question of whether continuing to pursue immunotherapies makes sense. By now the number of lines of therapy I've gotten make me ineligible for some trials: https://bessstillman.substack.com/p/the-drugs-killing-dying-..., and I've also blown through the more promising drugs for what is a difficult-to-treat cancer type.
It took just five years to get from their first promising results to FDA approval
This sentence is insane. "Just?" It should be happening in months, not years. These are people with fatal diagnoses. Having the FDA hold up therapies like this is criminal.
NYC's failure to allow enough housing to be built for families is a policy choice, and a bad one: https://www.nytimes.com/2024/02/08/nyregion/apartment-vacanc.... Both the city and state should do better.
I can't speak for everyone, but ours was great. The other day the car threw an error message about the battery; we brought it to a service center, which swapped the whole battery free under warranty and without bother. Tesla gave my wife $100 in Uber credits per day until they got a loaner a few days later.
Perhaps the best part of the "service experience" is not having to go in for oil changes, brakes, and all the other stuff legacy cars require.
This is interesting and also an inadvertent ad for Tesla. When my wife bought a Model Y in 2021, she ordered it online and the price was the price.
Turns out we probably should've gotten something else at that particular juncture due to life circumstances, but the process itself was painless.
but how is this not considered a massive crisis
Base rate up but total numbers still low. Google says 150k people/year (of all ages) get colorectal cancer, out of 333.3 million people.
One of my friends passed away earlier this year due to cancer and one of the questions I've kept wondering about has been about our slow progress in curing cancer. (Which admittedly stems from my own utter ignorance on the subject!)
A lot of that "slow progress" is due to the FDA's intransigence and conservatism, even in the face of patients like me who are dying already anyway: https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce...
See also "The dead and dying at the gates of oncology clinical trials" https://jakeseliger.com/2024/01/29/the-dead-and-dying-at-the... and my wife on what trying to enroll in clinical trials is like from the patient's perspective: "Please be dying, but not too quickly: a clinical trial story" https://bessstillman.substack.com/p/please-be-dying-but-not-...
We could and should be moving faster. I'm dying anyway, so if a treatment doesn't work or even harms me, I'm not much worse off than I was before the treatment.
I'm surprised to see this and wonder how much of it is due to non-Tesla cars not yet having easy access to Superchargers. My wife and I have a Model Y and charging hasn't been an issue. New Superchargers open all the time.
All or almost all carmakers are switching to the NACS port/charging standard (the Tesla one, basically), and that should simplify matters substantially.
https://www.instapaper.com requires selecting individual articles, but it's how I store and read.
I wish curry leaves in particular were more commonly available at common grocery stores: ingredients like tumeric, thai basil, and lemongrass now often are, but hardly ever curry leaves.
I for one am shocked—shocked!—that spending decades raising the cost of housing (a fundamental input to children) has reduced the number of children had: https://www.amazon.com/Rent-Too-Damn-High-Matters-ebook/dp/B....
I know of a couple of people I really trust that tried to explain to me how they feel when they try math or programming and it's more like a physical pain almost than frustration.
For a lot of people writing prose is like this too (https://bessstillman.substack.com/p/on-writing-or-not). Back when I taught English to college students, it felt like getting students used to creating the smallest fraction of writing possible—getting them started—was a key skill, as was trying to teach the kind of free association that leads to deeper insights. Learning to manage frustration is of vital import to many people who want or need to learn to write better.
Has anyone seen that work well in action
Yes. I live in a 4-over-2 and will go to stores that are relevant.