Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

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

jakeseliger.com

Post reply on HN
Print view View original

241–250 of 486 posts

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

#241

Post by serial_dev »

dghughes wrote: post #85

My Dad was dying of IPF and I was always on the hunt for anything that may help. Of course there are countless quack "cures" but I came across a study that said metformin may help. Metformin is what people with type 2 diabetes use to help to control blood lipids among other things. My Mom actually takes metformin since she has type 2 diabetes. My Dad's doctor wouldn't even discuss it and dismissed it outright. Dad di…

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 advice was to learn to live with it, because it's completely harmless and in young people, ablation, beta blockers are not worth the risk.

Having these irregular heart beats is a very uncomfortable feeling, so I was looking for articles about the root causes and potential treatments.

After trying a couple of things (both pills and lifestyle changes), I found an article that says arginine and taurine reduced the number of irregular heart beats in their experiment. I tried it out and I have basically 20-50 irregular heart beats a day. When I stop taking them, the irregular heart beats come back.

Now, I know I'm doing something that is potentially risky, but to me it is worth it (and I reduced my dosage, and I try to quit using them every couple of months).

* it's not really quack science as the science is real, just that me applying it in my situation was not recommended by a doctor

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

#242

Post by foobarbecue »

I thought the recent New Yorker article on FDA's drug approval policies, "When Dying Patients Want Unproven Drugs", was balanced, insightful, and well-written. It covers Thalidomide, and focuses on ALS and HIV. https://archive.is/u6vmI

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

#243

Post by skilled »

hattmall wrote: post #225
skilled wrote: post #180

Earlier quoted context omitted.

Why’d you be so pessimistic when there’s plenty of evidence that there is. Or are you saying that billions of Buddhists and Hinduists are delusional?

Oh, you know, it's just someone that thinks everyone except them is wrong!

Doesn’t really add anything to the conversation though

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

#244

Post by londons_explore »

7e wrote: post #214
londons_explore wrote: post #169

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. Then the snake oil manufacturer can peddle their unapproved treatment to as many people as they like, but they are losing money on every dose unless the treatment turns out to be safe and effective. Obviously you need a big team of scientists on the approval panel to make sure no snake oil s…

But at the end of the day, failed treatments still kill people. Some may choose the experimental treatment, and die, over the crappy chemo, which gives them a chance to live. Escrow won’t bring them back.

True. But speeding up the search for a treatment saves many future people.

The ethical tradeoff between definitely saving a life now or probably saving many lives later is an age old problem, but one which society hasn't properly converted into laws and processes in medicine.

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

#245

Post by haldujai »

tux3 wrote: post #232
haldujai wrote: post #162

Earlier quoted context omitted.

I don’t understand your overall point here as this is pretty much how the current system works. > It is possible to take those probabilities and to talk about the expected number needed to treat (NNT) for a medication, the expected side effect profile, how many people might live and how many might die. NNT > NNH = efficacy. To calculate these the trials need to be done, which is not the case for experimental therapie…

Trials are done in multiple phases, with a progressively wider population. There is a point where we consider a drug to still be unproven, but safe enough for human trials. I think that situations like TFA make a compelling case for selectively broadening access, for some drugs and some pathologies. The characterization of a choice between something proven and something with unknown values is too coarse and not a goo…

> 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 any overall survival data.

Safe for clinical trial means the harms are considered safe, has little to no relevance for efficacy.

Once again you’re ignoring the fact that there are (almost) always alternative treatments that have been proven to prolong life.

No one is offering nothing to poor prognosis patients.

From the blog post:

> Monday I’m starting chemotherapy, but that’s almost certainly going to fail, because a CT scan shows four to six new gross tumors, four in my neck and two, possibly, in my lungs.

In someone with such an aggressive disease everything is almost certainly going to fail, experimental or not. Chemotherapy will buy some time. Who knows what an mRNA treatment will do but there’s certainly no (not little, no) evidence that it will be curative.

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

#246

Post by [deleted] »

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…

[deleted]

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

#247

Post by jfk13 »

MostlyStable wrote: post #192
jfk13 wrote: post #186

Earlier quoted context omitted.

And how do we assess whether "someone understands the risk"? Often, I suspect nobody really "understands" the risk of some minimally-tested, experimental treatment.

This is a fully generalized argument against personal autonomy.

Yes, I suppose it could be taken that way. I wasn't intending to argue one way or the other, merely to point out that such an apparently simple condition ("if someone understands...") actually encompasses a huge amount of uncertainty, and so doesn't necessarily represent the "easy answer" that it might at first appear.

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

#248

Post by newaccount74 »

nine_k wrote: post #112
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…

I'd say that people should be allowed to try whatever treatments they agree to have, in order to save their lives, and also in other cases. One cannot say with a straight face that a woman has sovereignty over her body and thus contraception and abortions should not be banned, and preclude that same woman from getting a treatment that can possibly save her life but has not been approved yet.

My friends mom bought a fancy light for 2000€ that was supposed to cure her cancer. Spoiler: it did not.

Now, that wasn't in the US, and I'm pretty sure the quack device wasn't approved as a medical device. But the fact is that fraudsters will sell their fake medical products to desperate patients who have nothing left to try. These people should rot in jail.

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

#249

Post by denhaus »

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…?

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

#250

Post by Waterluvian »

riffraff wrote: post #14
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 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…

I guess the FDA has a role in minimizing the market for snake oil.
Post reply on HN