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

jakeseliger.com

391–400 of 486 posts

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

#391

There's a very easy regulatory solution: Roll the drug approval process back to the way things were done prior to 1962. Back then, safety testing was all that was required. Efficacy testing -- which is difficult, expensive, arguably unethical in itself, and in some cases effectively impossible -- was not required. Drugs cost ~20-50x less to bring to market, and were brought to market faster. Indeed the 40s and 50s ar…

Apparently there is already a Right to Try:

https://www.fda.gov/patients/learn-about-expanded-access-and...

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

#392
post #373

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. 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 manufactu…

No, that does not set the right incentives. You have completely written off the harm of dangerous or deadly drugs. The HepC drug Sovaldi brought in around $50B-100B in sales, but probably costs less than $50 to administer. Under your scheme it would make economic sense for a company to kill 1,000,000,000 people testing variants until they chance upon the right one because they incur no costs for administering deadly…

I think you forgot to price in the fact that some people live with what is effectively a time limit sometimes counted in months or weeks (like the person from the linked article).

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

#393

Earlier quoted context omitted.

> Why do we get to decide what is and isn't worth the risk? It's not their risk to take. Getting a drug to market is a complex process that can be derailed by any number of mistakes ranging from the mundane like improper blood draw during clinical trials to the tragic like accidental deaths that puts public pressure on the FDA to shut it down or spook away investors. Any hiccup in this process can kill it and once a…

I'm not sure removing options from the desperate and dying is a good idea. Those with means will just ignore your concerns and the rest will have _nothing to lose_.

I can't find it anymore, but there was a paper or maybe study looking into the question of healthcare outcomes for just such "people of means." Iirc there was some interesting data which showed being able to afford doctor shopping and concierge service was sometimes correlated with poor outcomes compared to the standard of care overall. I think it makes sense, the patient can demand what they want and then get it, but they're not necessarily armed with the knowledge or perspective to make the informed decision. If they can afford to find a doctor who values a lot of money over anything else though, they can get it, and that might not work out so well for them.

Michael Jackson, Joan Rivers and Lisa-Marie Presley for example would probably all still be alive if they didn't have the money to simply buy the healthcare they wanted, damn the consequences and cost.

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

#394

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. 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 manufactu…

> 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 to cure them that would be quite hard to falsify don’t you think?

> I’m not exaggerating when I say this might be the worst idea I’ve read in this entire thread.

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?

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

#395

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…

This is the real reminder for young people. Every single one of us is one tiny cellular mishap away from an untreatable, agonizing demise. Be KIND to one another, because when it is your turn to die, you will have wanted to have had a positive impact on the world and those around you.

Stabbing backs to maybe get a pay raise will mean nothing to you or your family. It's just one more person who won't honor your temporary existence.

Be KIND.

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

#396

Hopefully he makes it into a clinical trial. In case anyone is interested in reading what trial options are available for this type of cancer you can find the trials here: https://www.clinicaltrials.gov/search?cond=Squamous%20Cell%2...

There are 469 studies for that type of cancer that are accepting males of his age, of which 260 are in the US, on that site. Obviously, many are going to be inappropriate, but hopefully with something is available to him.

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

#397

Earlier quoted context omitted.

> This sounds like a recipe for killing people. Do you know what else sounds like a recipe for killing people? Not allowing people to access therapeutics that might save their life because it hasn't yet gone through regulatory approval yet for whatever reason (delays, too expensive to submit), etc. > There's very little that's approved by a non-US body and approved by the EU or non-OECD body that warrants clinical us…

> Do you know what else sounds like a recipe for killing people? Not allowing people to access therapeutics that might save their life because it hasn't yet gone through regulatory approval yet for whatever reason (delays, too expensive to submit), etc. You're assuming a therapeutic not tested in humans has a better chance of saving someone's life than something tested and available. Do you have any evidence to suppo…

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 helped solidify the sentiments shared by Kahn and other investigators who have conducted clinical studies with amisulpride. That meta-analysis identified amisulpride as the second most effective antipsychotic at reducing overall symptoms in schizophrenia patients (behind clozapine) and the most effective in terms of reducing positive symptoms. The analysis also ranked amisulpride better than clozapine in terms of tolerability and side effects."

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

#398
post #387

Earlier quoted context omitted.

Actually the Moderna trials are recruiting metastatic and treatment resistant disease. From his description he has not met inclusion/exclusion criteria for the studies due to treatments received and not received rather than being too advanced in stage. It's highly highly highly unusual to be offering an experimental therapy on compassionate grounds when conventional options that have potential to actually work well h…

Are there conventional therapies that he has not tried that could be effective? It seems he has never had chemotherapy, but he implies at this point that's a long, almost impossible, shot.

It depends what you consider the outcome to be, by virtue of being a 39 y/o with early recurrent and possibly oligometastatic disease he is in the definitively palliative-intent treatment category so everything is a long shot.

Really the best and only chance for curative intent with most cancers is radical resection with negative margins which unfortunately did not work here (most likely due to micrometastatic disease and perineurial invasion). All of these new and fancy systemic options are not believed or intended to be curative-intent.

If we're talking about meaningful prolongation of life the best treatment would be a PD-L1 inhibitor like pembrolizumab if he has expression. He doesn't mention systemic/immunotherapy in his post but on the donation page his brother does so I'm unsure if he's in the early resistance/treatment failure arm for pembro, if that's the case it's very devastating.

He's correct that gem/plat chemo isn't great but it's something. Patients in his position are best served in clinical trials (also in the treatment guidelines).

With that said it also seems he had an aggressive bone cancer in his childhood, this suggests something unique to this person (e.g. some genetic driver mutation or hereditary cancer syndrome) that may complicate any of this prognostication. Unfortunately something very atypical and aggressive is happening in this person.

H&N SCC in younger patients or HPV+ usually has good outcomes.

Given his history it's probably not relevant to this case but best advice for any HN reader is to go get your HPV vaccine and reduce the risk of SCC.

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

#399
post #280

Earlier quoted context omitted.

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

Because the trials sometimes take on people with very little time left.

That’s the estimate for number of people killed by the treatment not the number of people who died in total.

You should be careful not to exclude trials cancelled early when considering how risky trials are.

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

#400
post #366
post #349

Earlier quoted context omitted.

> anyone can take anything into their own bodies and governments can never, ever prevent them. Thought experiment: There is a magic drug or parasite where any dosage (whether deliberate, accidental, or fraudulent) will force the person into a single-minded violent quest to get another dose. For the next month, another hit is the most important thing in their world, even if that means selling everything they own, cutt…

Not OP, but laws against distribution? Absolutely. Laws against consumption? A terrible idea. What we should want to do as a society is funnel people interested in trying things we think they really shouldn't do towards legal chokeponts that are less onerous than DIY access under controlled distribution but still allow for attempts at prevention of the end outcome. The clearest example of this even more than your dru…

> Not OP, but laws against distribution? Absolutely.

> Laws against consumption? A terrible idea.

When we're on the topic of experimental medicine, it's the laws around distribution that have 99% of the effect.

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