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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

#451

Post by CogitoCogito »

krisoft wrote: post #394
CogitoCogito wrote: post #322

Earlier quoted context omitted.

> 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. That would never happen for good reason. Drug companies would have every incentive to bias the results towards approval by giving the drugs to detain pati…

> Drug companies would have every incentive to bias the results towards approval by giving the drugs to detain patients. What do you mean “detain” patients? Remember we are talking about people who have a terminal illness with no known cure. How can drug companies “bias the results”? Obviously I’m not saying we take anything they say as gospel, but in short order these patients are expected to die. If a drug managed…

> What do you mean “detain” patients?

I meant to write "certain".

> How can drug companies “bias the results”?

Choosing appropriate patients will lead to longer survival rate unrelated to the drug in question. The whole point of double-blind studies is to avoid this.

> Well, thank you. I aim to please. Are you sure that you understood the idea well? If you are, could you please explain with more words what is the misbehaviour you are worried the drug companies would commit?

I did understood you. You, however, don't seem to understand statistics or economics. Your idea directly incentivizes drug companies to choose patients more likely to make their drugs look better. It is a truly horrible idea.

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

#452

Post by A_D_E_P_T »

tgv wrote: post #446
A_D_E_P_T wrote: post #262

Earlier quoted context omitted.

> "B-but Thalidomide!" This is the reflexive response to every common-sense proposal to roll back the regulatory burden. I'd raise a couple of points in response: First, Thalidomide was never approved in the USA -- for safety reasons. The mechanisms that were in place at the time did their job. Second, the response to Thalidomide was overblown and indeed downright hysterical. "Better to let 100,000 people die of negl…

> It's a matter of quantity. A large data set of highly biased, uncontrolled data is still useless. You can't model yourself out of the factors that have not been recorded. And believe me, the data you'll get on patients that try experimental medication will be very, very incomplete. It also won't be a large dataset. How many people have squamous cell carcinoma between now and the moment of approval and are willing a…

> A large data set of highly biased, uncontrolled data is still useless. You can't model yourself out of the factors that have not been recorded. And believe me, the data you'll get on patients that try experimental medication will be very, very incomplete.

There are many safety issues that placebo-controlled and double-blinded studies didn't catch, but postmarketing surveillance later did. Large data sets are more powerful than you give them credit for --- and, moreover, in the real world drugs are not always used the way they are in clinical trial settings. In the real world, people skip doses, double up on doses, drink grapefruit juice, etc.

If you want a full picture of "factors that have not been recorded," you want as large a dataset as possible, as close to real world conditions as possible. It may not be as clean as you'd like, but it'll give you enough to draw every inference.

> How many people have squamous cell carcinoma between now and the moment of approval and are willing and wealthy enough to buy this particular medicine? 100 seems too much already.

When the alternative is to allow the drug to spend a decade or longer in development hell, I'll take poor data and lives potentially saved over "great data" (not really) and a pile of dead bodies.

Besides, when drugs are potentially curative, and the disease otherwise so invariably fatal, even 50 datapoints should be sufficient. This is trivial to model mathematically.

> Barely, according to wikipedia.

Oh come on. Besides, teratogenicity is now an absolutely basic component of safety tests. You don't need the FDA's failed paradigm of extensive efficacy trials to prevent "Thalidomide part II."

> Thalidomide was never going to save 100,000 people.

The exaggerated response to Thalidomide, exemplified in your first comment, has absolutely condemned more than 100,000 people.

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

#453

Post by jacquesm »

skilled wrote: post #431
jacquesm wrote: post #360

Earlier quoted context omitted.

You quoted evidence without providing any, and conflate evidence with belief. That also doesn't really add anything to the conversation. The smart money says 'there is no afterlife, so use what you've got'. If you - or anybody else - is so sure that an afterlife exists then it would be nice to present some actual proof and absent that to admit that you're making it up or that it's hearsay.

The smart money? Do you think that Buddhists make up the whole idea of succession just for show?

No, I think they made that up because they fell for the exact same trap as most other religions did: a desire to explain that which they didn't know anything about. They obviously didn't do it 'just for show' so I'm not sure why you would make it seem like I was thinking that.

Religions are several thing: power structures, coping mechanisms, focal points for social functions, explanatory mechanisms, scams and stories (origin myths etc) all rolled into one. Depending on which religion you are looking at one or more of these traits may be more dominant.

Every religion lays claim to some unique knowledge and tries to explain a lot more than they can and as a result they are - to me comically - incapable of adjusting to knowledge as it became available. The result is dogma, in one form or another.

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

#454

Post by casefields »

Latty wrote: post #24
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?!

Somewhat famously the US not doing this stopped Thalidomide being such a large issue in the US, but of course one example of it failing doesn't mean it is inherently bad policy.

It’s strange how people trot that out and never discuss the inverse.

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

#456

Post by jstummbillig »

HWR_14 wrote: post #375
jstummbillig wrote: post #358

Earlier quoted context omitted.

Could the former be fixed by requiring experimental drugs to be free of charge, or would that break how drug roll-out works? Somebody suggested an escrow account in this thread, which also seemed interesting.

I mean, the experimental drugs are already provided free of charge to the group participating in the study. I have no idea how it would change the economics if the ones given under any kind of "right to try" were also required to be free. As of now, "right to try" drugs are supplied by the manufacturer under whatever terms they want at their discretion.

Ah, interesting. Living in the EU, paying for drugs directly at any point is not something I come in contact with a lot.

Thanks for the insight. Seems complicated.

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

#457

Post by darkclouds »

Broken_Hippo wrote: post #448
darkclouds wrote: post #306

Earlier quoted context omitted.

Symptoms are used to diagnose, ergo is a treatment of symptoms a cure? Lets not forget the expansion of the DSM which pretty much incorporates every human being as having a mental health issue or sexual deviancy fetish. There is no normal in the DSM, so would some medical experts start dialling back on diagnosing new conditions to pad out their careers and income?

That bit about the DSM is a pretty obvious layperson's point of view: It is easy to say that you fit the criteria when you forget that the symptoms need to have negative consequences on your life. And there is 'normal' - normal is a range. There is a huge difference between being down after a loved one's death and finding yourself feeling that way for no reason or not coping 2 years later. Considering that - there is…

> That bit about the DSM is a pretty obvious layperson's point of view: It is easy to say that you fit the criteria when you forget that the symptoms need to have negative consequences on your life. And there is 'normal' - normal is a range.

Define normal? Likewise considering the all encompassing vagaries of some words, as noted in legislation, and the lack of detail that exists in descriptions of diagnosis and symptoms, whilst this makes it easier to generate AI's to replace some experts, its not really helping the patient is it?

>And no, no everyone has a "sexual deviancy fetish", just for the record.

Define normal.

> There is no actual cure.

You are uniquely placed to actually find a cure, because I'm reminded of how tolerant (lab) animals are when level 1 of maslows heirachy of needs exists, and I'm also reminded that (lab) animals can not convey information that an owner of a pet or intelligently constructed lab experiment could elucidate.

The phrase "Dont take no for answer" springs to mind, and Thomas Pynchon "If they can get you asking the wrong questions, they don't have to worry about answers.".

Survival of the fittest comes in all shapes and form. I know that copious amounts of histidine a precursor to histamine also causes remyelination of the nervous system, so maybe you have an amino acid lead that might be worth investigating.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4705972/

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

#458

Post by rincebrain »

haldujai wrote: post #403
porejide wrote: post #397

Earlier quoted context omitted.

The issue with antipsychotics tends to be the side effects, not the efficacy Amisulpride, for a lot of people, would be one of the best antipsychotics. Antipsychotics are incredibly important medications for a lot of people. It really matters that amisulpride is not available. https://psychnews.psychiatryonline.org/doi/full/10.1176/appi... "A comprehensive meta-analysis published in 2019 in JAMA that compared 32 oral…

> Antipsychotics are incredibly important medications for a lot of people. Agree. > It really matters that amisulpride is not available. Not sure about this, I'm not a psychiatric expert but my cursory lit review shows conflicting meta-analysis as to whether amisulpride is better than 2nd gen. Although your source is newer Cochrane is generally the gold-standard on SRs and the included studies in the 2019 JAMA articl…

The problem with "there are similar efficacy rate alternatives" is that, for most psychiatric drugs, it's not necessarily the _same_ population that is helped by two different drugs at similar efficacy for the same issue, even if the total success rates are comparable.

A number of people have tried many different individual or combinations of treatments before finding something workable, or close enough to workable that you can paper over the cracks. I would strongly suggest against concluding the lack of access to something isn't an issue for some patients because they have alternatives, without very compelling evidence.

A story from my recent past - I've had, historically, no issues swapping between different generic manufacturers, or name brand and generic, if someone stopped making something I was taking, or I moved and the pharmacies stocked different versions, or whatever. So a little over a month ago, when I noticed my meds looked visibly different after getting them filled, I checked to be sure they hadn't given me the wrong thing, but no, same dose, different generic manufacturer, and I stopped worrying.

...until I started getting extremely nauseous to the point of being debilitating, for 6-8 hours every time, when I take this medication twice a day. So I went back and tried the third generic manufacturer the pharmacy had, after a few days of making sure it wasn't a fluke, and the third one had the same issue. We finally ended up switching to the extended release version of the med, which had still more different manufacturers, and did not have this issue, since the first manufacturer had a shortage for over a month and counting.

Medications are a lot less interchangeable than we might hope.

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

#459

Post by agumonkey »

theptip wrote: post #409
agumonkey wrote: post #105

Earlier quoted context omitted.

It's a high worth debate, maybe there's a ethics curve.. for most cases you have the normal "don't do harm" but for life threatening you need another board to remove some stops without letting the scams proliferate.

"First do no harm" sounds good on paper, but it fails the trolley problem. It leads you to harmful beliefs like "we should not use the AZ Covid vaccine to save thousands of lives because it might cause one person to die of blood clots". The problem is that in the real world, it's extremely rarely the case that you can make an intervention that only has benefits, and doesn't have costs, so honestly applying "do no har…

Thanks, very interesting.. i dont know if it's worth setting up a group to raise statistical understanding or just wait for society to suffer enough to finally learn.

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

#460

Post by eilertokyo »

Retric wrote: post #280
eilertokyo wrote: post #152

Earlier quoted context omitted.

Your comment makes something that happens quite rarely (1-5% based on agent, and not quickly) seem like it happens quite frequently.

Some of these trials had double digit percentage deaths within 30 days.

Please provide some examples if you can! I could use the references
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