jseliger

I've been "reading the Internet" since the late '90s with sites like /., and, when I got diagnosed with the death sentence sentence—recurrent and metastatic head and neck cancer—I began looking into clinical trials, and I realized that I'd never read any good descriptions of what clinical trials are like from the patient's perspective.

So my wife and I decided that the thing that we needed to exist in the world didn't exist, and thus we made it. When my wife and I started writing in earnest about the clinical-trial process in particular ("Please be dying, but not too quickly" is the most comprehensive: https://bessstillman.substack.com/p/please-be-dying-but-not-...), I kept expecting someone to leave a comment or send an email saying: "Hey buddy, this has already been done, check it out here: _______." But that comment or email never came. Probably someone else's comprehensive essay and guide exists somewhere, given how big the Internet is, but I've never seen it.

Without having had this kind of experience, I think it's difficult to understand just how difficult and not-user-friendly the clinical-trial process is. If we can help move the needle on that, we might dramatically reduce the number of people who are in a position like mine. Personalized cancer vaccines are so close: https://jakeseliger.com/2024/04/12/moderna-mrna-4157-v90-new..., and I don't understand why the FDA hasn't approved Moderna's mRNA-4157 yet, apart from bureaucratic inertia and indifference to human suffering.

I hope no one who has read our work has to go through a version of what I've been through, or has friends or family who must, but, statistically, given that a couple hundred thousand people have seen it, someone will. And it is better to be equipped with some sense of what to do and how to do it, than to have to try to figure it from scratch. I've wound up emailing guidance to a lot of people about head and neck cancers, and clinical trials.

My wife wrote one: "The dangers of walking include falling in love" https://bessstillman.substack.com/p/the-dangers-of-walking-i...

Between September and January, however, the tumors in my neck shrank by about 20%, which is a startingly good response by R / M HNSCC standards.

Perhaps the most interesting question will ultimately be whether oncologists prescribe petosemtamab for patients who get early clean surgical margins, in an effort to prevent recurrence. Oncologists are reluctant to impose chemo-radiation because of chemo's deleterious side effects, but petosemtamab, though it causes rashes, paronychia, and other skin problems.

Thank you for making it. From what I've seen and experienced, the problem has been "garbage in, garbage out"—that is, there isn't sufficient data posted publicly on clinicaltrials.gov to figure out which trials are best and which are actually open and available. My wife wrote "Please be dying, but not too quickly: a clinical trial story. A three-part, very deep dive into the insanity that is the 'modern' clinical trial system" on using the system, and the actual experience of it: https://bessstillman.substack.com/p/please-be-dying-but-not-...

To figure out what's actually going on, we've had to make a lot of appointments and talk to oncologists to understand what is available and what isn't. The AI companies whose systems we tried missed the better treatments (e.g. BCA-101, or petosemtamab / MCLA-158), although we did not try yours, so perhaps it's capturing material others aren't. "Phone calls and appointments" are how I wound up learning about Seagen / Pfizer's antibody drug conjugate (ADC) PDL1V: http://jakeseliger.com/2024/04/22/the-emotional-trial-of-cli... (which appears to be working right now, albeit with side effects).

Right now, keeping a true system up to date would require a lot of phone calls, along the lines of VaccinateCA: https://worksinprogress.co/issue/the-story-of-vaccinateca/, which seems hard.

The FDA is bad: https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce... and I'm dying largely because of their torpor and intransigence. It's not just "a meme." It's my life.

A number of companies have sprung up that'll try to a tumor sample to a variety of treatments in order to figure out whether treatments from other tumor sites may work better.

My own tumors originated in my tongue; now I don't have a tongue any more (https://jakeseliger.com/2023/09/09/life-swallowing-tasting-a...) and the tumors reside in my neck and lungs. A lot of oncologists who specialize in head and neck cancers also work in lung, since there seems to be a lot of overlap between the two.

I don't know this for sure, but I think DNA profiling is changing how oncologists, and people more generally, view cancers, or at least many cancers. Decades ago, it wasn't feasible to take molecular snapshots of cancers. Now it's still not quite standard, though it should be, via companies like CARIS: https://www.carislifesciences.com/

MRNA and personalized cancer vaccines are showing tremendous potential in a lot of cancers: https://jakeseliger.com/2024/04/12/moderna-mrna-4157-v90-new... GBM is particularly gnarly; one of the few other treatments in trials I'm aware of is DCVax: https://www.uclahealth.org/news/article/fda-approval-brain-c...

One big problem is the FDA's slowness regarding treatments for otherwise fatal diseases like GBM (or recurrent / metastatic squamous cell carcinoma of the head or neck, which is killing me).

One big problem is the FDA's slowness regarding treatments for otherwise fatal diseases like GBM.

I don't have tremendous disposable income but pens are a pretty minor indulgence, which might excuse making them into a fetish item, writing pointlessly elaborate reviews of them (https://jakeseliger.com/2009/04/05/product-review-pens/), and so forth. Overall, I've come to like the Pigma Micron PN ("plastic nib") pens, which writes smoothly and from any angle—including above my head, which is handy for someone who likes to lie down and read.

I've carried around fountain pens, but they are too expensive if (when) lost, and too finicky.

There are a million morons online who claim that increasing the supply of housing somehow never moderates or lowers prices. Then it clearly happens.

A few weeks ago I rented a Model 3 from Hertz in San Diego, and the car didn't come with an SAE J1772 Charging Adapter (this covers most level 2 stations). That's crazy. I was staying primarily at UCSD for cancer treatment, and there are a million level 2 chargers that I couldn't access without the SAE J1772 dongle. The Tesla my wife and I have always has a SAE J1772 dongle in the center console. I complained about the lack of this essential part.

Hertz would charge for the dongle and then refund upon its return. The car itself was good!

I put up many links posts, so I probably link to an abnormally large number of sites.

I should probably clarify that point; oncologists are often dealing with small numbers and a lot of uncertainty. I'm also not sure how much they're supposed to say—I don't see the NDAs or other docs they sign with drug companies. That said, if they see tumors shrink in at least some patients, that's pretty good.

I also have recurrent and metastatic squamous cell carcinoma originating in the tongue. A lot of these 1b and even 2 trials are being tested in multiple cancer types. Something can work pretty well in lung but not head and neck, or vice-versa.

They will say they don't know the answer, but I prefer having some guidance. "Good" and "bad" are also relative, particularly for what I have, which is nearly always fatal. Is SGNTV good, cause it shrinks some people's tumors, or bad, cause of all those side effects? The answer is both.

It's still useful IMO to run sanity checks on what you're told. For example, one onc said that I should try a trial very similar to this one: https://www.oncnursingnews.com/view/lenvatinib-plus-pembroli..., or one like it, that had already failed. When I checked to see what research had been published, I was baffled by the rec. I checked w/ my oncologist at UCSD, and she was also like: "I would probably not rank that trial highly."

Discussion: https://news.ycombinator.com/item?id=28531025