@jseliger, I’ve been following your journey via your comments here on HN and the occasional post. I am glad you are posting and I think for those of us who haven’t been close to someone with a serious diagnosis and treatment like yours, it has humanized Cancer in a really helpful way. Thank you for posting and giving this insight and wishing you all the best as you continue along this path.
Anyone who goes through something like this is an inspiration to those they interact with. I wish the absolute best for you.
an inspiration to those they interact with
Indeed, those who confront suffering with courage encourage the rest of us.
What does it look like for someone to confront a situation like this without courage?
To be clear, I'm not really talking about this story in particular, but the way people discuss other people in really bad situations. It seems like almost any reaction that isn't "lie there motionless" gets called "courageous".
I guess it feels more like a pep talk than an evaluation.
What does it look like for someone to confront a situation like this without courage?
There’s a lot of dark places people can go and choose to stay when they experience tragedy. Drugs, alcohol abuse, suicide, wallowing in misery etc. Perhaps you’ve never experienced tragedy, or been tempted by these dark reactions but for many they are all too familiar and it takes enormous courage to combat them. Seeing examples of others who are suffering reacting positively is greatly encouraging.
I was diagnosed with cancer in 2013. I had many surgeries, lots of radiation therapy, and like the woman in "Brazil", my complications developed complications. I feel I received excellent care, and I have had no tumors spotted in 8-ish years. But I've been in pain every waking hour of every day since May 16th 2013. Sometimes the pain isn't too bad, sometimes I lie in bed, legs rigid with pain, and scream. If I get a serious recurrence of my cancer, or a new cancer, I'm going to blow my brains out. I can't conceive of anything occurring in my future that would make it worth going through a multi-year episode of surgeries and other aggressive cancer treatments again.
I'm not 100% sure, but I've heard from oncologists and other docs that people with bad diagnoses often lash out at doctors and family who are trying to help them.
Some people also go into denial about what's happening, and denial can be fatal. This is not quite 100% on point, but my wife wrote a story about meeting a patient whose large mass on the side of her neck had not been there for just a couple days: https://bessstillman.substack.com/p/just-because-you-wont-se...: "Per triage, my patient’s symptoms started yesterday and she’s worried that the swelling might be an infection or maybe a pulled muscle, but the moment I walk into the room I know that I’m going to ruin her life."
Some attempt to take the hedonic path that would not, I think, be very satisfying, and yet they pursue it (heedlessly spending down cash on trinkets, the non-prescribed drugs you might imagine, Vegas, etc.). This is distinct from someone who decides: "I've always wanted to visit Tokyo and now I'm finally going to do it."
I think it's good to try and lead and positive, generative life, even when what is left of that life is limited, and when what "positive, generative" means will vary widely by person.
That's it, I'm going talk to my doctor about getting the Galleri test. I was already on the fence, but this is the straw that breaks the camel's back for me. (It isn't advertised as targeting his specific cancer, but goddamnit, I need some peace of mind.)
Is it available?
It is! I got one for $750-ish about a month ago.
Do you have to be over 50 to take it?
Looks like no, but you're more likely to have to go the online provider route which is $950. https://www.galleri.com/patient/the-galleri-test
They're running discounts lately, my dr's office had $200 off for anyone that wanted it and they have regular sales every couple of months it seems.
I don’t really know what to say, it’s hard for me to fathom what you had to go through. The bit you wrote about having to spit in a cup for the rest of your life, really brought it close to me how much we take for granted.
I admire your strength.
I wish the best for you and your wife.
Thank you! I wish I felt strong; I had a friend from high school visiting this weekend, and he said that my strength is inspirational. I looked around wondering if he was talking to someone else, but in fact I was the only person in the room.
In my experience people confuse "what the fuck else am I supposed to do?" with "strength" a lot in ways that are ... not as helpful as they think they are.
See also, in the not-so-helpful department: "you're so lucky [to not be dead yet]" when luck would've not been being so close to death in the first place.
I also don't really understand how it's supposed to be inspirational but I wish you the best and hope you make it through to the other side to the full recovery phase.
This makes me think about the saying about how being brave doesn't mean not being scared, it means pushing through the fear and doing what has to be done anyway.
I feel like it's similar to your strength. From your writing I gather you've had more than your share of bad days, emotionally, during this ordeal. But you're still here, still writing, still posting here, talking to random strangers on the internet. And you and your wife's drive to document all this so others can better navigate the clinical trial process in the future... yeah, absolutely, this is strength, and a lot of it, even if you don't feel strong.
Anyhow, for what it's worth, know that there are random people on the internet who follow your story from afar, and that we're rooting for you.
Sometimes it seems like there is no choice but to be strong. But in reality someone could choose to give up and give in and quit. Not making that choice is what we admire in people, and you in particular.
That sucks, but his attitude is great, and that’s really important. I sincerely wish him well, and appreciate the note.
I had a coworker that had the same thing. Watching him deal with it was difficult.
I had a coworker that had the same thing
Oh man, I hope he or she was okay. This is terrible. In most people in whom squamous cell carcinoma of the tongue gets caught early, it's curable. I'm in the group in whom it's caught relatively early, but the initial surgery and radiotherapy isn't enough.
Regarding attitude, I figure that there is much I can't control, but attitude is one I can. WWMAD? (Would would Marcus Aurelius Do?): https://jakeseliger.com/2023/09/18/stoic-philosophy-finding-...:
You’ll see stoic ideas threaded through the essays my wife and I have been writing about my fatal cancer diagnosis: “Every day I’m trying to make a good and generative day, and I remind myself that there are many things I can’t control, but, as both Frankl and the Stoics emphasize, I can control my attitude.”
One way to see the virtues of this attitude is by process of elimination: What’s the alternative? Wallowing in bad days in which I accomplish and achieve nothing important? Getting angry about things I can’t control, and things that will remain the same whether I’m angry about them or not? Lamenting that which cannot be, and will not be no matter how much I wish it so? Nothing will bring my tongue back. Bemoaning my fate will not avert it (though I’m also not passively accepting fate: as described below, I appear to be in a clinical trial for a novel, promising drug that targets squamous cell carcinoma of the tongue). The likelihood of another decade of life is not literally 0.0, but it’s under one percent and would require a series of near-miracles via clinical trials.
It was a "he," and it was not OK. I think it was fairly advanced, by the time it was diagnosed. The guy was a health nut, and avoided doctors like the plague.
I won't go into details about what he went through. Not fun.
I sincerely wish you the best. I live on Long Island, and have been watching folks battling cancer, constantly, since 1990 (when I moved here).
I’m sorry, but would you mind clarifying that last statement? Is Long Island a hotbed of cancer? Did you move to Long Island to work with cancer patients?
Yes, Long Island is known for having cancer clusters.
One thing I get from this is you need to be really on the ball when you are this sick. Make hard decisions, do tonnes of research and so on. It is probably important to have support people who can “Karen” for the need of a better word the medical and insurance system when it isn’t working. Probably could be a job in itself. Probably is. The follow on is it helps to be wealthy before you get sick.
The Mayo Clinic sounds like a garbage healthcare provider.
have support people who can “Karen” for the need of a better word the medical and insurance system
Yep - that's called a "patient advocate". I learned about it when I was in my teens, and went with my grandfather to the VA hospital on a regular basis.
Multiple times I had to remind the healthcare providers that he had long-standing kidney issues, that contrasting agents had caused immediate and significant reductions in kidney function in the past, and that as a result we should consider why such tests were ordered and what benefit the results would provide.
I 100% believe they would have unintentionally killed him years early if I hadn't been there to question them and push back.
What a simultaneously terrible and inspiring story- I wish Jake the best for whatever that is worth in such a terrible situation. If you guys didn't click it, I highly recommend his wife Bess's corresponding post to this one- "Forever is such a short, long time" it is one of the best essays I have ever read on love and relationships. There is an incredible amount of wisdom in what she wrote, that can only have come out of living through incredible hardship. It literally made me cry, and I am going to quote her in my wedding vows I am writing.
The essay in question: https://bessstillman.substack.com/p/forever-is-short-long-ti...
I don't know you but I love you. I wish I could help you even feel those feelings for you.
Hang in there
What was the original reason you got that PET scan that led to the cancer diagnosis? Just random luck that you happened to even discover it? Scary stuff
Thanks for your experience, that's important to remind us (me) of the other side.
Sometimes I feel really sad that the bus factor of some treatment is 1, and double sad when that one is me. No one should have delayed care just because I need my vacation, or my day off.
Kudos to the surgeon who trusted his instincts and suggested a surgical biopsy, sometimes patients get so happy with dubious results that we feel like we're removing their happiness, or that we're secretly hoping for the worst.
I hope that you're going through this with peace of mind.
had to look up what a glossectomy is. all I can say is OOF... there are few things I wouldn't rather lose than my tongue.
@jseliger, thank you for sharing. Sorry to welcome you to the club nobody wants to join. And congratulations for making it this far. And bravo for setting such an example fighting on others' behalf. I'd like to do more of that myself. My prognosis was similarly grim: median life expectancy of 18 months, 5-year survival rate of 10%. That was more than 11 years ago. My point is that nobody knows what will happen. If hearing more about my story might be helpful, or if I could send you one or two books that helped me the most, please just let me know. No pressure. In any case, know you're not alone, you're loved, and you're profoundly connected to the broader family of cancer survivors. It's a strange and terrible gift, to be confronted with your mortality. All good thoughts your way, brother.
Good post.
How does one even find doctors who actually care? seems like luck that you managed :(
You're welcome!
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.
Both very in character for what FDA does.
It seems to me trying to look at it objectively. The FDA is in an impossible situation forever.
If they delay drugs they are bureaucratic and indifferent. Filling graveyards, as said.
If they release drugs too fast/unproven then they open the gates to scammers, unethical companies trying to sneak ineffective products they spent too much on, ect. Basically the whole reason the FDA was formed would be in question. Then it sounds self serving but the people in charge will start to ask why do we even have the FDA? Which will drain funding then eventually set us back to the reason the FDA had to be invented in the first place. Snake oil salesmen will run rampant and we will need an agency to prevent dying desperate people being taken advantage of for whatever remaining money they have.
The FDA's position is that it's better for 10,000 patients to die of neglect than have 1 patient die of quackery.
Drug development takes 12 years [1] and costs >$2B (on average) because the FDA requires >99.99% confidence that pharmaceutical companies are not selling quack cures. Do we need that level of confidence? Especially for cancer, is that degree of confidence warranted? Is the process efficient? I think that it would be absurd to even argue these points.
There's legitimate fear of quack medicine and scammers -- and then there's whatever the FDA is gripped by, which seems to me a lot like insanity.
[1] - https://pharmanewsintel.com/features/understanding-us-food-a...
I can’t see that this is true at all.
I don’t believe the FDA has any such quantitative constraint on approvals. The guidelines are strict, but each is evaluated individually.
There’s no such quota for how many drugs are approved, how many people can die, to say this is the FDAs position is not true.
Is something more desperately needed and deserved by people who re suffering? Of course yes, things should be better.
I’m just saying of the many important problems that need to be solved, the FDA having life death limits is not one of them.
The FDA's position is that it's better for 10,000 patients to die of neglect than have 1 patient die of quackery
Unfortunately this is one of those subjects that turns off people's brain and turns on their emotions. It's disappointing to see so many HN'ers with their pitchforks out on this topic.
All the people on here with advanced degrees got them to kill orphans with drones right? Just like all the doctors they are accusing of killing people went to med school so they could kill people indirectly though policy.
The entire reason the FDA exists is that there is only a tiny sliver of people that can offer any real medical help to a dying person. Yet there are endless streams of con artists that will enthusiastically take the money of a desperate dying person because its easy. Shut off brain forgets that.
Based on my experience the actual solution is greatly expanding the FDA to allow them to be able to handle the highly increased flow of new research and create a central point for dying patients to find and get in programs. Right now they don't have the resources and have to rely on strict bureaucracy. Again the idea that the overwhelming majority of doctors would not jump at the chance to save people rather than put them in the ground slower is absurd.
The FDA needs overhauled so start contacting your senators is pretty much all we can do.
I don't think you understand how the process works.
The FDA's job isn't to hold your hand and get you into scientific research studies.
The FDA mandates certain steps -- the collection of certain data -- before it allows drugs to be marketed. Phase 1 is a safety study, Phase 2 is an efficacy study, and Phase 3 is a broader efficacy study. It is on the companies to collect this data; the FDA merely reviews it. (And then reddit-votes on which drugs to approve, with results that are sometimes funny, sometimes nakedly unethical e.g. flibanserin, and sometimes just ridiculous e.g. aducanumab.)
Having more FDA employees would not speed-up the process by much, as the data collection itself is the arduous bit, nor would it reduce expenses at all.
The best possible thing to do would be to simply get rid of Phases 2 & 3. That's how they did things until the early 1960s -- and, lest we forget, the 40s-60s were known as "the Golden Age" of drug development. Instead of increasingly onerous and expensive trials, allow drugs to be marketed once they're proven safe, and subject them to mandatory postmarketing surveillance.
Besides, that hard-won efficacy data is often interpreted (by the FDA!) in subjective and bizarre ways, so its value is not awfully high. It's not worth the price society is paying for it.
lol. It's not an explicit rule. It's their revealed preference. They're incredibly slow to act on approvals, inflexibly demanding of "data" that is difficult to obtain at best and completely unnecessary at worst, and they don't give a damn about the cost. (Both the near-term human cost, and the financial cost -- which goes on to reduce innovation in the drug business, leading to a further toll in human suffering.)
In the end, they've killed an awful lot of people via inaction, lack of urgency, lack of efficiency. But that's okay, because killing people via inaction is not quackery, after all. Better a million die of neglect than another thalidomide, the FDA would say.
I agree, but I it's important to understand why.
If/when someone dies of something FDA approved, it becomes a big scandal. Heads might roll, funding constrained.
If 10,000 people die from something that an unapproved treatment could cure, it's not news at all. People have always been from that.
FDA, like any organization, responds to incentives and does what's best for it.
I went through terminal cancer with both parents. It's infuriating that with that diagnosis the medical cabinet is open with respect to palliative care, in quantities that make an exit simple. But at the same time they feel the need to protect you from possible treatments. Potential accelerated death? Approved. Potential prolonged life? We'll need more evidence.
It's especially infuriating that federal restrictions on medical treatment are unlawful to start with (there's no constitutional basis for them).
I think the Commerce Clause is a pretty sound basis for most FDA regulation.
It just gets weird with the overbroad supreme court decisions that are like: "well, stuff that only happens in a single state but that might be used for interstate commerce or somehow impact interstate commerce indirectly" is also covered. [1][2]
[1] https://en.wikipedia.org/wiki/Gonzales_v._Raich
[2] https://en.wikipedia.org/wiki/Wickard_v._Filburn
One can only get from regulating interstate commerce to telling a terminal patient what medicine he may consume by a tortured logical process driven by motivated reasoning.
I’ve had a partial glossectomy for the same PD-L1 negative cancer and have been reading your posts since before I was metastatic recurrent. I think about you relatively often. (I might have even seen you at UCSF a ~couple months ago, but I didn’t want to awkwardly ask if you were the guy from the internet.)