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

#471

Post by YZF » Sun, Jul 23, 2023, 6:04 PM UTC

webmobdev wrote: post #429

YZF wrote: post #55

Earlier quoted context omitted.

Money and politics. Why can someone drive for 6 months in a country with a foreign driver's license but can't get a local license? I've had this misdiagnosed medical condition for 25 years by multiple doctors. Nothing serious but extremely annoying. There are approved drugs in Europe for decades which are much better than the ones approved in North America. One day the company making the drug that's approved in North…

Why can someone drive for 6 months in a country with a foreign driver's license but can't get a local license? A government issued id, like a driver's license, is often required for various services like opening bank account, a telephone connection, avail some government service etc. Thus a local driver's license can be used for deception by a foreigner who wants to pretend to be a local citizen.

That part is fine. I'm talking about needing to retake tests.

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

#472

Post by jacquesm » Sun, Jul 23, 2023, 8:32 PM UTC

skilled wrote: post #468

jacquesm wrote: post #453

Earlier quoted context omitted.

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…

I don’t know man. How many people do you know in your immediate circle that would say that they wholeheartedly believe that we only live once? Do you not feel like life on this planet would be very different if that was the case? It’s a really deep question and I would prefer you contemplate it if you plan on responding.

Haha, ok, seriously: any answer I give you that you don't like and I haven't contemplated enough?

It's not a deep question at all, it's super superficial: the afterlife is a ruse to keep the gullible beholden to various power structures. It's a man-made construct that requires at a minimum something extra-dimensional for which there isn't a shred of evidence. How people live if they believe or if they do not believe is entirely up to them, and if they would live in a different way if they didn't believe in an afterlife means they've bought into the lies. I'd much rather people make their decisions eyes wide open informed by an ethical framework that does not rely on fairytales or outright lies.

And yes, pretty much everybody in my immediate circle except for one believes that we live only once and that one is a catholic priest of whom that would be expected. But I can't look in his head so who knows what he really believes...

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

#473

Post by haldujai » Sun, Jul 23, 2023, 11:41 PM UTC

cplusplusfellow wrote: post #424

haldujai wrote: post #368

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…

Do our “right to try” laws mean: only after you’ve gone through our $5m treatment plans?

“The Right to Try Act is one way for patients who have been diagnosed with life-threatening diseases or conditions who have tried all approved treatment options and who are unable to participate in a clinical trial to access certain investigational treatment options.“

As an aside Keytruda is closer to 150k/year.

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

#474

Post by haldujai » Sun, Jul 23, 2023, 11:42 PM UTC

sgseliger23 wrote: post #410

haldujai wrote: post #398

Earlier quoted context omitted.

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 diseas…

Hey thanks for this post. You sound very knowledgeable. Couple things: Jake’s SCC is non-HPV. He did Keytruda, and it had no effect. He’s being treated at the Mayo clinic where most of the oncologists were ambivalent about chemotherapy. He’s beginning platinum based chemo on Monday as a hail mary to try to kill this stuff. And yeah — all the doctors have been flummoxed by the aggression of this cancer. It was the sam…

I’m sorry to hear that. Best wishes for Jake and your family.

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

#475

Post by noduerme » Mon, Jul 24, 2023, 2:27 AM UTC

peteradio wrote: post #319

noduerme wrote: post #151

Earlier quoted context omitted.

So, observing a problem is no more complicated than becoming aware that it exists. That's the only interaction necessary to invoke ethical liability. How does then pretending you didn't observe it release you from anything?

Your guilty conscience will undoubtedly destroy you from within. If you do not repent and request mercy from the great beyonder then surely your next life will be lived in misery as some sort of atomic particle with human awareness and deep dread of your current circumstances.

I can't tell how much of your sarcasm is based on taking me literally. I'm an atheist. I don't believe in an afterlife, and I'm always blown away when people say that without a "fear of God" or fear of hell, no one would act morally. Whenever someone says that, I'm like, well, I guess you want to kill and torture and rape people and you need this dumb framework to stop you from doing that, so thank goodness for religion. But personally I think we all have ethical responsibilities to other living beings, and especially to our own kind, which spring from appreciating the complexity of the world but can be completely attributed to rational, selfish, deductive reasoning and self-preservation, if you really want to get down to it.

Tl;dr you're arguing the fundamentalist POV that ethics can't exist without a God.

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

#476

Post by dang » Mon, Jul 24, 2023, 5:05 AM UTC

nradov wrote: post #325

maxbond wrote: post #82

Earlier quoted context omitted.

It used to be regarded as a miracle drug that could be used over the counter in many circumstances, and as they looked into it they discovered it just couldn't be used safely. That they've narrowed it down to some use case is more of a testament to the thoroughness of the investigation, I'm sure there are many chemicals that could treat leprosy this just happens to be the one we understand how to manufacture and when…

You are obviously deeply and aggressively ignorant about pharmacology. Thalidomide is an effective immunomodulator which is prescribed for multiple conditions beyond just leprosy. https://medlineplus.gov/druginfo/meds/a699032.html As with any medication there are risks and side effects but that hardly makes it "worthless".

Hey, please omit personal attacks and swipes from your comments, as the site guidelines ask: https://news.ycombinator.com/newsguidelines.html.

Your comment would be just fine without that first sentence.

Edit: it looks like we've had to warn you about this many times in the past—for example:

https://news.ycombinator.com/item?id=32737135 (Sept 2022)

https://news.ycombinator.com/item?id=30120252 (Jan 2022)

https://news.ycombinator.com/item?id=29598017 (Dec 2021)

https://news.ycombinator.com/item?id=25935223 (Jan 2021)

We end up having to ban accounts that keep doing this and don't listen to warnings. I don't want to ban you, so please fix this!

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

#477

Post by serial_dev » Mon, Jul 24, 2023, 8:50 AM UTC

datori wrote: post #338

serial_dev wrote: post #241

Earlier quoted context omitted.

Anecdotal. When "quack" * science helped. After COVID (both the disease and the vaxx), I got heart arrhythmia, I had around 5000 irregular heart beats a day (PVCs and PACs mainly), and those all happen in a matter of hours, so when they happen, it's pretty debilitating. After a while, I invested in a Bluetooth stethoscope and ECG watches, the doctors finally believed I have something. However, the cardiologist's advi…

I had a similar presentation: sudden 1-3% PAC load at rest following an asymptomatic COVID infection. Cardiac MRI showed minor residual scar tissue. I noticed my diet was pretty seriously deficient in magnesium, and after starting a supplement the abnormal beats have nearly vanished.

Yes, magnesium was the first thing my gp recommended me. Unfortunately, magnesium supplementation had a negligible effect on my irregular heart beats, which is a pity, as it's more of a standard medication than taurine.

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

#478

Post by skilled » Mon, Jul 24, 2023, 2:10 PM UTC

jacquesm wrote: post #472

skilled wrote: post #468

Earlier quoted context omitted.

I don’t know man. How many people do you know in your immediate circle that would say that they wholeheartedly believe that we only live once? Do you not feel like life on this planet would be very different if that was the case? It’s a really deep question and I would prefer you contemplate it if you plan on responding.

Haha, ok, seriously: any answer I give you that you don't like and I haven't contemplated enough? It's not a deep question at all, it's super superficial: the afterlife is a ruse to keep the gullible beholden to various power structures. It's a man-made construct that requires at a minimum something extra-dimensional for which there isn't a shred of evidence. How people live if they believe or if they do not believe…

> lies

> superficial

It sounds like you're not up for a discussion whatsoever. And I respect that. I just dislike when people dismiss thousands of years of history because they themselves have no inherit experience with something.

Hacker News is sometimes crazy like that. You stumble into ideas/people who present to you concepts that perhaps are too crazy to take it all at once.

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

#479

Post by knodi123 » Mon, Jul 24, 2023, 7:20 PM UTC

bhhaskin wrote: post #362

knodi123 wrote: post #357

Earlier quoted context omitted.

Devil's in the details. Suppose Pfizer wants to test a new acne drug based on radium nanoparticles fused to asbestos. It might work, and hey, if you can give a homeless guy $100 and a bottle of vodka to "voluntarily take it into his body" and let you watch to see what happens- that's so cheap! Why not give it a shot!

If the person is mentally able to make that decision for them selfs, then why not?

Because I don't want to live in a country where desperate people can sell their lives to soulless corporations for literal cash. That's some real dystopian bullshit. At the extreme end of this spectrum is the most dangerous game, where homeless people agree to be hunted for sport. And the topic we're actually discussing is pretty damn close to that end of the spectrum.

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

#480

Post by krisoft » Mon, Jul 24, 2023, 8:39 PM UTC

CogitoCogito wrote: post #469

krisoft wrote: post #467

Earlier quoted context omitted.

> Your idea directly incentivizes drug companies to choose patients more likely to make their drugs look better. Yes. So? The whole patient group in question is destined to die fast. The best we currently can offer them is aleviate their discomfort and help them come to terms with their demise. If the drug company can identify a subgroup who they can possibly save and actually help those that is winning. > You, howev…

> You are aproaching it as if the question we are asking is if this is the best study design. But that is not the question we are asking. There is a patient who we believe is about to die soon. In comes a drug manufacturer and says to the patient: “you do not have to die. I think I have the cure for you”. The patient wants the drug the drug manufacturer is offering. The question is if we are to interject and stop the…

> This is already largely possible in most states and called "right to try".

The article’s author is convinced it is not covering them. Do you know otherwise? Perhaps you should let them know. You might save a life.

> Choosing patients and then pretending that the data gathered has any reasonable statistical validity when considering general approval of a drug is totally crazy.

Would like to mention that it is your adition that the drug manufacturer chooses the patients. It was not part of my original comment. And it is not core to the idea.

One can simply imagine a protocol where the manufacturer declares their criteria (what condition, what severity[1]) and how many doses they are able to provide and those “places” get filled up with volunteers. And this of course can be made even more buletproof.

1: and before you point it out, of course if the manufacturer is only willing to test their drug on not-so-bad-but-dying people then they get approval to be used on the same selection.