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I am dying of squamous cell carcinoma, and potential treatments are out of reach

jakeseliger.com

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Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#291

Post by moralestapia »

riffraff wrote: post #14
tux3 wrote: post #3

There seems to be a growing sentiment that FDA delenda est , but if we don't fix the underlying problem that led to this situation, it will just come back. As the author says, no one ever blames the FDA for the people it failed to save. But approve something without the certainty that it isn't potentially going to kill someone, and there will be hell to your doorstep. Even if you want the experimental treatment, you…

I remember at least three instances in my country where the authorities were forced to allow people to use experimental treatments due to media clamor. In all three instances, the result was that the treatments were snake oil and people died that might have lived otherwise. It's easy to say "people who have no other options should get access to experimental treatments" but the problem is that people who have other op…

>but the problem is that people who have other options want those too

So, why can't one go through its own choice of treatment? Disregarding if its a good choice or a bad one.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#293

Post by mlyle »

haldujai wrote: post #284
mlyle wrote: post #271

Earlier quoted context omitted.

> I'm just taking author's following comment at face value Plenty of mRNA human trials of cancer treatment are in progress. Indeed, as he stated, he wants into two that are underway, but that he is probably too far along for. He wishes that they had been greenlit even earlier and perhaps made their way to be approved drugs that he could just be given by his local doctor. > For the situations where there's "no active…

> Indeed, as he stated, he wants into two that are underway, but that he is probably too far along for. The author is incorrect on this, he’s not too far along but he does not meet inclusion criteria for either of the studies he cited as both require systemic therapy. mRNA is not being pitched or tested as a first-line mono therapy by Moderna. I’m not sure why the author is jumping the gun here and ignoring approved…

He may not be too far along from the standpoint of inclusion criteria; rather he believes he is likely to die before he is able to join the study.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#294

Post by kortex »

I_Byte wrote: post #144
abhaynayar wrote: post #77

I read this, and while I felt immense sadness, I will obviously move on with my life soon enough and forget about it. I wondered, if I were ever in the same situation, and someone read what I wrote before dying, they might empathize for a bit, but then they'd move on as well. I just really wish that there's something beyond death, that there's something out there, and that all the suffering and unfairness and randomn…

Let us say that there is nothing beyond death, does that really mean that life is ultimately pointless? I'd argue that the idea that there is nothing beyond death is what makes life all the more meaningful. We are only going to get one shot at all of this, we better make it count. From this I derive the motivation to work hard at what I do and ultimately try to contribute to the problems we face as a species before I…

You can philosophise yourself into just about any position: death is real & life is meaningless, death is real and life is meaningful, death is but a transition & this life is meaningless, death is merely an illusion and life is meaningful,

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#295

Post by ayewo »

sgseliger23 wrote: post #226

This is my brother. I love you. Anyone who has suffered through this disease or has a loved one that experienced it knows the feeling of helplessness. More on Jake’s story below, and a link to the fundraiser to support him and his wife: https://www.gofundme.com/f/help-the-fight-against-cancer-wit... Be kind and good to your loved ones. Life is short and no one knows how much time we have left. While the FDA’s antiqua…

The surname is very familiar. I checked and Jake is in fact a long-standing member of this community as jseliger [1].

I’m sorry for the very difficult times your brother is going through. I hope and pray that his situation improves.

1: https://news.ycombinator.com/user?id=jseliger

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#296

Post by haldujai »

mlyle wrote: post #293
haldujai wrote: post #284

Earlier quoted context omitted.

> Indeed, as he stated, he wants into two that are underway, but that he is probably too far along for. The author is incorrect on this, he’s not too far along but he does not meet inclusion criteria for either of the studies he cited as both require systemic therapy. mRNA is not being pitched or tested as a first-line mono therapy by Moderna. I’m not sure why the author is jumping the gun here and ignoring approved…

He may not be too far along from the standpoint of inclusion criteria; rather he believes he is likely to die before he is able to join the study.

I’m ignoring that part because it is nearly impossible to prognosticate prior to initiation of systemic therapy, with the exception of some phenotypes but we don’t have the pathology report in this case.

My point is that he doesn’t even meet the inclusion criteria for these studies, regardless of aggressiveness. This has nothing to do with the FDA, he can’t join the studies because Moderna doesn’t want to study him at this point and not because he won’t survive long enough to enroll.

Whether or not his prognosis statement is correct.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#297

Post by civilitty »

inconceivable wrote: post #274
civilitty wrote: post #142

Earlier quoted context omitted.

> First, people die because they choose a truly worthless treatment that can never work, over bad ones that at least had a snowball's chance. Like Steve Jobs. Fruit juice kills people.

clarification: fruit juice is basically pure fructose which cancer loves and your organs can't handle. actual fruit has fiber and you're unlikely to eat enough to cause harm.

woosh

Steve Jobs got into alternative medicine to treat his pancreatic cancer, including trying a fruitarian diet. Since he had a rare form that isn’t as fatal as pancreatic cancer usually is, there’s a chance he could have survived significantly longer if he had instead treated it with traditional, non-experimental medicine.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#298

Post by krisoft »

londons_explore wrote: post #169
exmadscientist wrote: post #133

Earlier quoted context omitted.

To sibling commenters: immunotherapies aren't the only problem. There are a ton of truly evil companies out there pushing therapies that do not work, have never worked, and will never work, because they literally have no possible mechanism to ever do anything . This is a crime, but it's very very hard to prove. And these companies get very good at gaming the system, because that is their product. They are mechanisms…

A simple way to stem most snake oil is to put all payments for snake oil treatments into escrow till the treatment is approved. Then the snake oil manufacturer can peddle their unapproved treatment to as many people as they like, but they are losing money on every dose unless the treatment turns out to be safe and effective. Obviously you need a big team of scientists on the approval panel to make sure no snake oil s…

> A simple way to stem most snake oil is to put all payments for snake oil treatments into escrow till the treatment is approved.

Even simpler is to prohibit payments for these experimental treatments, but let people who whould die anyway participate in them as long as it is free for them. In return the drug companies could use the outcomes as data points towards their aproval applications.

Why would a drug manufacturer do that? Why would they offeir their advanced but as of yet unaproved drugs for free? It is true it would cost them the manufacturing cost of the drug, but what they get in return is data on how efficient/safe the drug is. Assuming the drug works well they could use that data to prove their case and get approval. And if it is safe and has the desired effect they get their aproval and they could then charge for their drug as usual.

This sets the right incentives for the drug company. If they know they are selling snake oil they would be crazy to offer it for free, especially because all it would do is to prove that it does not work. If they think it can work they gamble with their own money. Which is good because the drug company knows the most about their own drug. The patient in general is not knowledgeable enough to evaluate the chances of an experimental therapy, but the drug company is.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#299

Post by arrosenberg »

maxbond wrote: post #27
tb_technical wrote: post #6

What I don't understand is why the FDA doesn't automatically rubber stamp approvals on medicine approved in Canada and the European Union. We all know their medicine is good - so why can't I get it?!

Thalidomide was widely approved, and I'm glad the FDA didn't rubber stamp it.

Sure, but they did rubber stamp Fen-phen and Vioxx despite plenty of people within the FDA understanding it should come with a black box warning. The FDA needs a win that's more recent than 1971 if they want to demonstrate their efficacy as regulators.

Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach

#300

Post by kortex »

swayvil wrote: post #196
abhaynayar wrote: post #77

I read this, and while I felt immense sadness, I will obviously move on with my life soon enough and forget about it. I wondered, if I were ever in the same situation, and someone read what I wrote before dying, they might empathize for a bit, but then they'd move on as well. I just really wish that there's something beyond death, that there's something out there, and that all the suffering and unfairness and randomn…

Our salvation is in psychedelic drugs. I'm serious. There is no cheaper way to turn swine into gentlemen. Now we just need to trick them into eating the stuff.

I agree more/most folks ought to try them under the right circumstances (yada yada mental health caveat here), but I also know plenty of psychonauts who are complete pricks, even some who have broken through on DMT and are still complete wastes of oxygen as humans. Go figure.

They are a doorway to new perspectives. You still gotta internalize the message.

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