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

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

#251

Post by jasode »

mlyle wrote: post #210
jasode wrote: post #146

Earlier quoted context omitted.

>I think the solution is to invest more into medical research now, The author is arguing that terminally ill people (with a few months left to live) -- like him -- would be willing participants in trials to help medical research . They already know that mRNA drug or whatever likely won't cure them. It's possible some new scientific knowledge of the drugs' effects can still be gained even when it doesn't cure them. Gi…

There's a lot of problems with it, though. Even if advancing medical research was the main goal-- ad hoc use in dying patients provides unclear data. Medical research wants clear inclusion criteria, metrics, reduced statistical noise from similar patients, predeclared outcome measures, and economies of scale in running trials. We already let terminal patients participate in medical research, but only inviting patient…

>There's a lot of problems with it, though. [...] Medical research wants clear inclusion criteria, [...] , but only inviting patients at times and meeting criteria that optimizes the research [...] But terminally-ill patients push for inclusion beyond this: to be dosed when there is not an active trial, [...]

Your objections are sensible but that's beyond the scope of this author's argument. I'm just taking author's following comment at face value: ">The FDA was loathe to approve initial mRNA human trials, even when those trials would have been full of people like me: those who are facing death sentences anyway."

If it's the drug researchers who don't want the author as a test subject, that's understandable. But he's arguing the _FDA_ shouldn't be the one blocking his participation.

For the situations where there's "no active trial" caused by the FDA not greenlighting the experiments, then of course, the complaint will be that "terminally ill patients want to participate in trials that don't exist". That's sort of a circular argument -- caused by the FDA.

Again, if there's no active trial because the medical researchers themselves are not yet ready, that's understandable. But if the drug scientists are ready but the FDA is not, that's a different issue and it's the focus of the author's essay.

All that said, I don't know how much scientific progress the FDA holds back because of "safety". I'm just trying to explain the author's position.

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

#252

Post by learplant »

skilled wrote: post #180
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…

Why’d you be so pessimistic when there’s plenty of evidence that there is. Or are you saying that billions of Buddhists and Hinduists are delusional?

It's not that they are delusional, it's that they can't prove it. They don't have evidence, they have faith.

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

#253

Post by HPMOR »

scoofy wrote: post #215
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…

When there is nothing beyond death, there is no death. We won’t be sitting on the sidelines blindfolded. We won’t exist. From our perspective the death never actually happens. I’m surprisingly okay with my lack of experience of the billions of years before the earth existed, and I won’t experience the billions after. That said, just because we can’t stay at Disneyland forever, we might as well go on the rides while w…

All though you're correct it is rational to not fear death. I personally, and likely many other people here, have a very very strong aversion to it.

I DO NOT want the cessation of experience.

Ideally, I'd like to continue in perpetuity, to see the sun rise from Venus, or visit my tenth generation offspring on Saturn.

All of those missed experiences would be deeply saddening. To see our species conquer to universe, to see intelligent life bloom in the darkness of space, that is the goal.

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

#254

Post by joak »

thechao wrote: post #178
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…

There's a trivial well-regulated market solution: medical company A registers treatment B with the FDA; patients can try experimental B from A on A's dime: let them out their money where their medicine is.

Exactly, a treatment should be free until approved by FDA.

The team would try to make the treatment an experiment useful for science. They would have no incentives to kill prematurely patients that would otherwise have lived longer. They would work in good faith.

Disclaimer: I actually had had a treatment (surgery) not yet approved, it saved my foot from amputation. This was in Europe.

The doctor was adding me to the long lists of patients he saved. He also trained other doctors to perform the surgery. Eventually the procedure was approved by FDA and in Europe. I'm glad to have contributed.

Before going on that I read all the articles related to my problem (many thanks to sci-hub) and then send a email to the surgeon. He said "I can indeed help you" (best day of my life) I didn't pay anything (only the plane tickets to get where he was)

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

#255

Post by echelon »

7e wrote: post #214
londons_explore wrote: post #169

Earlier quoted context omitted.

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…

But at the end of the day, failed treatments still kill people. Some may choose the experimental treatment, and die, over the crappy chemo, which gives them a chance to live. Escrow won’t bring them back.

If I knew I were going to die, I'd at least want to try something new even if the chances were slim. If it didn't work out, at least it'd be a new data point for those that come after. That means something.

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

#256

Post by m3kw9 »

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…

We all find out

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

#257

Post by abecedarius »

eilertokyo wrote: post #155

Unclear to me why clinical trials seem unavailable to him, which is how he would gain access to these treatments. The major cancer centers generally will have options for his exact situation, though sometimes they require he finish conventional and salvage treatments first.

He wrote "The FDA was loathe to approve initial mRNA human trials". The implication seems to be that if not for this added delay, this potential treatment would be further along.

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

#258

Post by hotpotamus »

serial_dev wrote: post #203
hotpotamus wrote: post #181

Earlier quoted context omitted.

I mean, fentanyl? Obviously it's a whole subject that could be unrolled/debated, but I don't have any interest in doing that today. Really, I thought I'd just point out one interesting and often unknown aspects of US/State law (assuming this is mostly a US-based forum; I know you said universal human right) - taking drugs isn't a crime anywhere that I'm aware of. Possession of them certainly is, but just having taken…

If buying, selling, and possessing are all illegal, it's illegal for all practical purposes.

I suppose that's the goal, but it's one of the interesting aspects of US law to me that taking drugs/being high on them is not a crime.

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

#259

Post by atmosx »

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…

> Even if you want the experimental treatment, you cannot get it. Killing someone in an attempt to help is deeply unethical, while merely letting them die is not your fault. This is sometimes also known as the Copenhagen interpretation of Ethics.

Interesting. Thanks for sharing the "Copenhagen interpretation of Ethics". I've thought many times about this problem, didn't know it had a name.

Comes to mind Dante Alighieri: "The hottest places in Hell are reserved for those who, in a period of moral crisis, maintain their neutrality."

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

#260

Post by darkclouds »

01100011 wrote: post #218
can16358p wrote: post #173

There should be a universal law in human rights stating anyone can take anything into their own bodies and governments can never, ever prevent them. Governments/regulators deciding what you can put into your body is beyond ridiculous: applies to all substances and drugs. Inform about the potential risks and effects: sure. Prevent: never.

Without socializing of medical costs I completely agree. But if you are asking other people to pay for a part of the consequences of your decisions then you should accept that those other people can constrain the decisions you can make.

The US govt makes medical information available online perhaps to give a more informed decision.

"IL-6 Activities in the Tumour Microenvironment. Part 1"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6765074/#:~:tex....

"Serum Level of Interleukin-6 in Patients with Oral Tongue Squamous cell Carcinoma"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4461844/

"Interleukin-6 role in head and neck squamous cell carcinoma progression"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5698512/

I also know from Google Scholar, that copper increases IL-6, penicillin breaks down into penicillamine, used to treat Wilson Disease, a copper metabolism difference, and I also know that Omega 3's look promising for reducing IL6.

https://pubmed.ncbi.nlm.nih.gov/29803716/

And thats just an example of a cursory look into SCC.

Socialised medical costs, isnt always a panacea, knowledge and honesty is the closest you will get to a panacea for medicine.

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