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

#281

Post by tlb » Sat, Jul 22, 2023, 7:11 PM UTC

HWR_14 wrote: post #277

jstummbillig wrote: post #212

This seems bad. Help me understand. In what ways does always letting individuals choose to take an experimental drug not work, if we make sure they know what is known and what is not? They are desperate, and that's a horrible place from where to make a decision, but dying is a really bad alternative. What are the pitfalls that would allow for this to not always be the option? How would this go more horribly wrong tha…

If it were for science alone, it might be fine. The problem is when Steve Jobs is sick and I walk up to him and sell him an experimental cure for $2,000,000,000. He can trivially pay it, but I have a huge incentive to lie. At a smaller scale, a more efficient conman can take all of someone's assets. And not just the dying person's. How many people wouldn't sacrifice everything to save a spouse's life or their child's…

The lying seems like the problem there. Present the patient with accurate records of previous trials and outcomes, let them make an informed decision (with help from their doctor, if they're not scientifically literate) and I don't see a problem.

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

#282

Post by alpineidyll3 » Sat, Jul 22, 2023, 7:11 PM UTC

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…

Imo the whole US medical complex needs competition from a small but sophisticated libertarian state without any of the regulations that formed the present system, and I think it will happen. The market demands it, and the world would be better off with some competition. Most likely it will begin with some small nation that sells anti-aging therapies.

There are companies from which you can order bespoke mRNAs. Lead times vary but are in the weeks. Many are abroad. The other components of mRNA vaccines can be assembled by someone with 2 years of biochemical Ph.D. experience. There are no laws against a person assembling and injecting themselves with anything.

I have extra sympathy for the writer of this article, since mRNA vaccines (even if they were a random sequence) are relatively lower risk than many other sorts cancer interventions which are FDA approved. I happen to be an ex-professor, who is a director at a drug company. I know that if I were the unfortunate author of this article, whose heart is in the right place. I would probably be injecting myself with my own janky version of whatever offered hope.

Whether that would actually change my prognosis? Probably not. I can say though that I _would_ and I believe others are entitled to positive freedoms I'd afford myself.

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

#283

Post by takinola » Sat, Jul 22, 2023, 7:12 PM UTC

throwaway894345 wrote: post #229

takinola wrote: post #209

Earlier quoted context omitted.

I love the innovative thinking here but I can easily think of a way to game this system. Snake Oil LLC mounts a PR campaign claiming the governmen is trying to shut them down by delaying approvals so they can't get their money so they can't undercut Big Pharma. If Snake Oil (TM) doesn't work, why have patients ponied up $X billion in fees over the years? You have enough stories like this (plus there will inevitably b…

I mean, this is just a “sufficient misinformation” argument that could be levied against literally any kind of policy. No policy can survive sufficient misinformation.

The point I am making is not a rebuttal to this specific proposal but that any such change will have an attack vector. Hell, the reason we are having this discussion is because of the (unfortunate) case of someone not being served by the current policy. Any new change to the policy will have such cases which will lead to this same discussion.

Creating an equitable drug approval process is a true dilemma.

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

#284

Post by haldujai » Sat, Jul 22, 2023, 7:12 PM UTC

mlyle wrote: post #271

jasode wrote: post #251

Earlier quoted context omitted.

>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…

> 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 systemic treatment options.

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

#285

Post by realitygrill » Sat, Jul 22, 2023, 7:13 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…

Would you email me? I'm really interested in learning about this. I have similar intuitions about places to avoid.

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

#286

Post by rdl » Sat, Jul 22, 2023, 7:16 PM UTC

denhaus wrote: post #249

rdl wrote: post #164

I hope more and more medicine/science moves outside the reach of FDA. If someone is willing to pay for a treatment (or recreational product), and is reasonably informed/competent to decide the risks, and it's not a risk to anyone else, go for it. If someone tries to prevent consensual commerce (possibly while wearing a silly uniform or carrying a printed ID badge from a state), violate the law if on balance it's wort…

two questions: - where do you go, and why? - how do you get your US insurance to cover/work with providers outside the US? does it just automatically work or…?

I mostly go to expat/tourist-focused high-end clinics in Asia (there are a bunch of options; mostly depends on which country you're going to be in -- Thailand, Singapore, Japan are particularly strong). You can get a really comprehensive physical (cardiac calcium, exercise stress test, imaging, comprehensive blood panels, multiple doctors/specialists, etc. for https://my.clevelandclinic.org/florida/departments/executive...). I travel enough for work that I can just go a few days before/after a meeting or conference, so no incremental cost (maybe an extra day or two of hotel).

I do carry Blue Cross/Blue Shield PR coverage ("PPO Gold", $230/mo), although it doesn't cover anything outside of PR except for emergency care. I should probably get a secondary insurance plan (which might include full coverage outside the US, or might even include shorter visits to the US as well), but for now I'm comfortable self-insuring medical costs, particularly since I think I could get insurance negotiated rates in the US even if they're paid out of pocket.

Better quality, lower cost, than anything I've found in the US. I live in Puerto Rico, which has particularly bad medical care; if I lived in Boston or SFBA I'd possibly have a local doctor, but I haven't found anyone in PR, except for expat friends who are neurorads/etc., who is a competent doctor. "Have a pain? Get on a plane" is the plan, and I have medical evacuation insurance, an ALS bag in my house, etc. for that.

The other upside is my records remain under my control; they don't get put into some weird insurer/employer accessible system protected only by laws. I can request/receive raw files and keep them myself.

(So far, I don't really have any serious or chronic conditions besides being overweight and slightly high blood pressure, but if I had a screening discover cancer or something, I'd want to have full flexibility on how to proceed with that.)

(Relatedly, I've deferred getting a dental implant for a failed root canal since right before Covid, so currently looking for the best dental implant medical tourism option -- Mexico, Colombia, and Asia are all pretty solid. It's 3 visits (plus possibly orthodontics since it's been so long with a missing molar), but internationally is maybe $2-3k vs $5-15k.)

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

#287

Post by scoofy » Sat, Jul 22, 2023, 7:17 PM UTC

HPMOR wrote: post #253

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…

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…

I would also like to continue in perpetuity, it's why maintain general fitness and I generally avoid some life-shortening things like smoking (though I do consume alcohol). The problem is that life in perpetuity doesn't actually happen even from treatments of even our wildest sci-fi fictions. By extending life, we merely kick the can of death down the road...

Actual immortality achieved would just push concerns to the heat death of the universe, and folks acting as Cyber-Punk Holden Karnofsky would be spilling ink about the need to invest in star-moving technology to create a big crunch. I don't mean to be trite here. The point is 10 years, 100, years, 1000 years, or 100 billion years, the dilemma is the same, because the linearity of time means any non-infinite amount of life is ultimately minuscule.

The psychological dilemma of existentialism is a challenging one, I'll fully admit that. It's one I've accepted. The benefits also exist though. It forces you to live in the moment to some extent, when others are solely focused on the future.

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

#288

Post by msteffen » Sat, Jul 22, 2023, 7:17 PM UTC

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 think it could be ethical to let people try experimental treatments in the context of a phase 1 clinical trial, ensuring that something is learned from the attempt. However, I have also heard that an issue with that constraint is that connecting patients to clinical trials is a huge logistical problem that has not been well-solved.

It actually seems like the kind of problem that could be a good fit for tech: have a registry of clinical trials, make sure it’s widely known and consistently used. I don’t know much about the problem, though, so I don’t know if or whether that’s unrealistic.

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

#289

Post by haldujai » Sat, Jul 22, 2023, 7:20 PM UTC

tux3 wrote: post #276

haldujai wrote: post #245

Earlier quoted context omitted.

> While most new drugs indeed fail (the large majority of them), in diseases with very poor prognosis like OP's cancer, I think we would benefit from still looking at the tradeoff as a decision under uncertainty, instead of a complete unknown. Even with less data than we would otherwise want. Which is literally what just happened with osimertinib for NSCLC. It was approved for clinical use and was implemented without…

You're right that there are alternatives, and there is an existing standard of care. I don't think I'm ignoring that. Let me clarify, I am not saying that patients with poor prognosis are being offered nothing. They are being offered standard of care. I think sticking with standard of care until new drugs have gone through the full, current process may be net negative under the current process, and considering the co…

Current standard of care includes experimental therapy. What you are describing is once again how novel cancer treatments are being implemented today.

Furthermore, Step 1 of the NCCN treatment guidelines for these kinds of cancers (i.e. advanced and/or poor responders to conventional chemo) is always that the patient is enrolled in a clinical trial.

In this authors case he does not meet inclusion criteria for the therapies he is listing, both trials require systemic therapy with novel PD-1 inhibitors (aka immune checkpoint inhibitors, immunotherapy) which when they work do so fantastically with little side effects.

Per his description he has not tried any systemic therapy yet.

I’m unclear whether he’s lumping chemo with immunotherapy (often the case by non-domain expert patients) but not even Moderna is interested in going from surgery directly to mRNA.

This isn’t the FDA getting in the way. He hasn’t exhausted good treatment options yet to be eligible for unapproved experimental ones. It would absolutely be detrimental to ignore ICIs in an eligible patient in favor of [insert non-approved experimental therapy with no evidence].

I’ve seen far more advanced metastatic H&N SCC survive for years on ICIs in my clinical practice. We don’t know all the specifics of this case but this isn’t nothing/days/weeks vs mRNA as the author is pitching.

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

#290

Post by abhaynayar » Sat, Jul 22, 2023, 7:22 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 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 -- that's what makes me sad -- not my personal fear of death, or anything to do with status.

And even to a lesser extent -- why do we suffer -- is it a law of physics that can't be bent? I don't agree with people who believe more pleasure equals more pain. There will be people who live amazing lives, and those who don't. And so I feel that we as intelligent beings can reduce randomness, and take control of our environment and make sure we can all go on Disneyland rides at least to some extent, and hopefully eventually figure out what's outside of Disneyland.