Bess Stillman, a physician, writes on Substack about her husband's cancer, clinical trials, FDA rules, and how doctors think.
HN links it in threads about Jake Seliger's illness, clinical trials, and compassionate use, where commenters weigh access to experimental treatments.
Jake posted as jseliger on HN: https://news.ycombinator.com/user?id=jseliger
He blogged at <https://jakeseliger.com/>, and numerous of his blog articles were submitted to HN: <https://news.ycombinator.com/from?site=jakeseliger.com>. That includes numerous topics, over the past year or so his experience with cancer, often concerning frustrations with the process and mechanism.
His essay on agenticness especially strikes me as hugely insightful and underappreciated. It was submitted several times to HN but saw little discussion:
<https://jakeseliger.com/2024/07/29/more-isnt-always-better-death-and-over-treatment-as-a-downside-of-agenticness/>
Jake's wife, now widow, Bess, blogs at Everything is an Emergency: <https://bessstillman.substack.com>. That also details the cancer / caregiving experience, from the point of view of a wife, caregiver, expectant mother, and emergency-room doctor.
> Our society's morbid, irrational fear of quack medicine
It is not an irrational fear.
Brandolini's Law applies: "The amount of energy needed to refute bullshit is an order of magnitude bigger than that needed to produce it."
The only way to prevent quackery is to cut it off hard before it gets started.
Wakefield demonstrated the disaster that happens when you don't.
(And if you have been reading this site for very long, you know the experimental treatments are already around--we're not currently lacking for possible cancer treatments. The problem is finding the trial. Then the problem is getting people through the process and then getting them to the trial. See: "Please be dying, but not too quickly": https://bessstillman.substack.com/p/please-be-dying-but-not-too-quickly)
Both patient participation in clinical trials and compassionate use of experimental treatments are fairly common for cancer patients, with various accessibility barriers. (One issue with the latter, for example, is that the incentives aren't lined up for companies to provide unapproved drugs to dying patients, you're way more likely to get a horrible complication that leads to bad press than a miraculous recovery).
Here's an insightful blog series about Jake Seliger's experience participating in clinical trials. He was a regular HackerNews user who passed away in 2024: https://bessstillman.substack.com/p/please-be-dying-but-not-too-quickly
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.
> There is more to life than power and money.
I've never tried either end of the power or money scales so I'm not qualified to agree or disagree.
Your story is about personal power - applying your skills to a problem that most people are powerless to solve.
For some reason your story made me think of this: https://bessstillman.substack.com/p/please-be-dying-but-not-too-quickly -- Where's the accessible database of trials?
This link to Jake's site is more a link to a post by his wife Bess:
https://bessstillman.substack.com/p/how-to-let-go-one-life-ends-while
And to quote dang from yesterday,
Recent and related (and heartbreaking):
Starting Hospice - https://news.ycombinator.com/item?id=41157974 - Aug 2024 (116 comments)
No Salt — https://news.ycombinator.com/item?id=41167467 — Aug 2024 (160 comments)