I am dying of squamous cell carcinoma, and potential treatments are out of reach • Hacker News Board

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

#301

Post by mft_ » Sat, Jul 22, 2023, 7:31 PM UTC

prmoustache wrote: post #29

The author seems to forget that entering a trial doesn't necessarily give you access to the treatment. You have as many chances to be in the control group receiving a placebo. And as bad, sad and frustrating as it sounds to someone in a desperate situation, it is for the greater good of many more human beings, protecting us from snake oil.

> The author seems to forget that entering a trial doesn't necessarily give you access to the treatment. You have as many chances to be in the control group receiving a placebo.

This is untrue, in this case.

Typically, only some phase 2 and phase 3 trials are randomised; the treatments that the author refers to are at an earlier stage of development and so not in either of these phases. All patients will receive the active therapy.

It's also worth noting that for cancer trials, while new treatments in these later phases may be tested against a placebo, it's never just a placebo - that would be unethical. If the new treatment is an add-on to an existing standard-of-care treatment, then they'll receive the standard-of-care treatment in the placebo group. If it's not an add-on, then it will be tested directly against the standard-of-care. If there isn't an established SoC, it can sometimes be approved without a randomised trial, if the results are good enough.

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

#302

Post by scoofy » Sat, Jul 22, 2023, 7:31 PM UTC

abhaynayar wrote: post #290

scoofy wrote: post #215

Earlier quoted context omitted.

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…

I'm not overly concerned about death on its own (I feel it's going to be kind of like being asleep), neither am I that concerned about my role in the universe. Instead, I feel more for people who truly suffer in life maybe due to poverty, or due to disease, etc. who don't get to go on Disneyland rides. It makes me feel what was the point of it all? It has to be teaching us a lesson beyond the "simulation" and if not…

I completely agree. Ironically, the existentialist should be more concerned about general welfare, not less. There is no afterlife to set things right. We should not be surprised that ethical hedonists like Peter Singer are so concerned about animal welfare.

We suffer almost certainly because it's an evolutionary adaptive feature for us we picked up somewhere along the way. It is no surprise that the general suffering we find in developed countries, namely loneliness, is directly related to human reproduction.

Is it a generally happy or sad state of affairs? Who's to say. It's our state of affairs, and we best do what we can to make the most of it.

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

#303

Post by jonhohle » Sat, Jul 22, 2023, 7:33 PM UTC

exmadscientist wrote: post #133

riffraff wrote: post #14

Earlier quoted context omitted.

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…

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…

Maybe someone should create a throwaway and provide a list of they’re concerned about retribution. People not calling out scum because they are afraid of the consequences of outing criminals makes the world a crappier place for everyone.

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

#304

Post by tux3 » Sat, Jul 22, 2023, 7:34 PM UTC

haldujai wrote: post #139

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. Says who? In terminal truly no-option diseases (e.g. glioblastoma multiforme) it’s pretty easy to get access to experimental therapies on compassionate grounds. The challenge in this particular case brings us to: > Killing someone in an attempt to help is deeply unethical, while merely letting them die is not your fault. This is a false dichotomy. What…

>In cases where an experimental therapy has at least some limited evidence (i.e. suggestion it might work) it’s quickly approved and pushed into clinical pipelines, osimertinib/Tagrisso for lung cancer is a recent example of such a treatment.

I think that's the main point of disagreement. There are some encouraging cases where the process works well, and it's fair to point to osimertinib as an example.

But there is a good case to be made (although various blog posts likely state it better than I could in a comment) that the current process introduces enough delay that the opportunity cost is higher than the risk.

Most drugs fail. But getting the drugs that do work to patients even a year earlier may be a much larger benefit than the cost of giving people with serious diseases broader choices, in addition to the current best known standard.

No one is advocating we just let people die, but there's an argument about the cost of delaying therapies and the cost of giving people choices that warrants careful consideration. While proven therapies are good and snake-oil is bad, improving standard of care for everyone historically saves many more lives than sticking with what we know for a longer period of time.

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

#305

Post by colordrops » Sat, Jul 22, 2023, 7:34 PM UTC

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…

I'm not scared of death. I'm scared of an extended painful exit.

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

#306

Post by darkclouds » Sat, Jul 22, 2023, 7:36 PM UTC

Broken_Hippo wrote: post #266

darkclouds wrote: post #219

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. It should be a escrow release when a patient is cured. Let the science and knowledge speak for itself instead of statistic doing the talking. The problem is these drugs companies are the stealth chemical weapons development program for the military.

It should be a escrow release when a patient is cured. This just winds up being cruel. We don't understand a number of diseases, and we don't know how to cure them. But we can treat symptoms, and sometimes prevent them even if it isn't a cure. It's OK to make Insulin Plus that keeps diabetics alive longer. I have MS, and freaking trust me, I want my non-cure medicine. Without that medicine, my chances of having a ver…

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?

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

#307

Post by kortex » Sat, Jul 22, 2023, 7:37 PM UTC

baggy_trough wrote: post #268

bruce343434 wrote: post #163

Earlier quoted context omitted.

You are enabling quack doctors

You are killing people under the guise of helping them.

Giving someone Treatment X likely means they won't be pursuing Y, whether it be to avoid polypharmacy drug interactions, or simply because the patient prefers X's side effect profile to Y. Y may be the proven treatment, with worse side effects but better efficacy. Even if the doctors inform the patient "X may not work at all and may make it worse", the patient might still choose it.

"What's the harm?" you say. The problem is, without any threshold, there are countless Treatment X. Every single snake oil comes out of the woodwork.

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

#308

Post by donall » Sat, Jul 22, 2023, 7:39 PM UTC

One aspect of the problem here is the difficulty in running a clinical trial, particularly at the recruitment stage. The covid-19 trials all had a surfeit of participants because of a pandemic, but with modern cancer treatment trials the qualification requirements significantly cut down on the eligible population.

This, in itself, isn't a huge obstacle. The problem is the state of healthcare data systems. It's next to impossible to perform high-quality search (even by individuals approved to do so by the IRB). The state of the art in most places is regex searching in SQL.

This is something we have the power to contribute to. Bringing modern search capabilities to important datasets like health (while maintaining HIPAA-conpliance) is a much better use of engineering time than mining spyware data for creepy insights...

[Disclosure: I contributed heavily to one of the major medical search products on the market. We dealt with organisations that expended tens of thousands of dollars and many months per candidate for recruitment. Using some very straightforward IR tech we literally found all their candidates in a few minutes, plus many more. But there is so much more to do!]

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

#309

Post by joshuamorton » Sat, Jul 22, 2023, 7:40 PM UTC

newZWhoDis wrote: post #158

mustacheemperor wrote: post #129

Earlier quoted context omitted.

If the treatment needs to be administrated by a doctor, it demands the resources of the hospital and connected system, for a novel process. It does introduce a real risk factor for the rest of the healthcare provider’s system and the other people counting on it. I don’t see the comparison you’re making at all, really - a novel treatment has completely different context from an abortion. Talking about immunotherapies…

If I’m terminal and my doctor and I want to try the treatment, who are the feds to tell me no? Screw ‘em

We are all, in some sense, terminal. At what number of months or years left to live does your terminality become sufficient to let you try whatever?

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

#310

Post by haldujai » Sat, Jul 22, 2023, 7:40 PM UTC

tux3 wrote: post #304

haldujai wrote: post #139

Earlier quoted context omitted.

> Even if you want the experimental treatment, you cannot get it. Says who? In terminal truly no-option diseases (e.g. glioblastoma multiforme) it’s pretty easy to get access to experimental therapies on compassionate grounds. The challenge in this particular case brings us to: > Killing someone in an attempt to help is deeply unethical, while merely letting them die is not your fault. This is a false dichotomy. What…

>In cases where an experimental therapy has at least some limited evidence (i.e. suggestion it might work) it’s quickly approved and pushed into clinical pipelines, osimertinib/Tagrisso for lung cancer is a recent example of such a treatment. I think that's the main point of disagreement. There are some encouraging cases where the process works well, and it's fair to point to osimertinib as an example. But there is a…

> Most drugs fail. But getting the drugs that do work to patients even a year earlier may be a much larger benefit than the cost of giving people with serious diseases broader choices, in addition to the current best known standard.

This is contradictory. Most drugs fail, how do we identify the efficacious ones other than through trials?

Depending on the anticipated efficacy from early trials as compared to existing ones it will get fast-tracked before the phase II is completed.

Where is the evidence that we’re delaying efficacious therapies where there is no good alternative?

I sound like a broken record right now but this blog post is suggesting we jump to experimental therapies (which would be off label for the author as he does not meet inclusion criteria) before we even have phase I data let alone efficacy, when good validated treatment options exists.