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

jakeseliger.com

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

#441

Post by HWR_14 »

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…

When I first posted, I didn't know Jake was on HN or that you were here either. If my critique hurt either of you, I'm sorry.

I hope the chemo he starts on Monday works and Jake recovers.

I hope that you and Jake find some comforts and joy during the upcoming battle.

The best of luck.

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

#442

Post by michaelsbradley »

thumbuddy wrote: post #395
sgseliger23 wrote: post #226

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 tempor…

Memento mori

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

#443

Post by nine_k »

newaccount74 wrote: post #248
nine_k wrote: post #112

Earlier quoted context omitted.

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.

I'm sorry to hear this.

My idea is not about quack medicine. People should be discouraged from using quack medicine, and made abundantly informed that it's guaranteed not to work, while consuming their precious time alive which other treatments might extend.

My idea is about something that has promising results in scientific trials, but may carry unknown risks, and so is not yet approved. The risks may be worth it, because the alternative is a certain and quick death.

The patients should, of course, be also abundantly informed about the risks, the odds of success, etc.

Of course, some people would do things that we would find irrational, no matter how we try to persuade them against that. This may of course be painful to see, but I don't see why should we curtail the free will of an adult in their sane mind, as long as nobody's rights are being infringed. Certain new things always look crazy even though they have merit: see vaccines, blood transfusion, etc.

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

#444

Post by maxbond »

maxbond wrote: post #377
chroma wrote: post #372

Earlier quoted context omitted.

What hypothetical evidence would cause you to change your mind about allowing American doctors to prescribe drugs approved by the EU?

I haven't made the counterclaim to that. That's not the same as saying that the FDA should rubber stamp all European approvals. Should doctors be able to prescribe drugs approved elsewhere? When we're talking about lifesaving treatment that isn't available in the US, yeah probably there should be some process to do that. I imagine insurance companies will make this next to impossible, but that's not a reflection on y…

I'm sorry if I came off as like, an unreasonable FDA bootlicker or as being callous to the people dying or suffering reduced quality of life due to bureaucratic incompetence, I do think that's terrible.

If what you wanted me to agree with is that doctors should be able to get people drugs that there's excellent reason to believe are safe and effective, regardless of whether the FDA has finished approving them, then yeah, I see how that makes sense.

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

#445

Post by happysadpanda2 »

A_D_E_P_T wrote: post #343
technick wrote: post #273

I feel somewhat closer to this person because I was once in his position as a child fighting a neuroblastoma in 1981 and some how my mother found a way to get me on an experimental list which saved my life. Half of the kids that took the drug died by the time they were teens due to heart failure, obviously I wasn't one of them, but am thankful for the chance to live a full life. When the odds are against survival, th…

> When the odds are against survival, there shouldn't be any rules limiting treatment, if it means even a slightly higher chance of winning. I agree with you. But the FDA would ask you to rigorously define "slightly higher chance of winning" -- and prove it. In the event you cannot do this, they believe that letting you try an experimental drug would be more unethical than letting you die of neglect. So I'd rephrase…

I am not yet done thinking on this area, so my thoughts here are incomplete, but thay said:

Would this not also open the door for any snakeoil salesman to prey on what might be medically "hopeless" cases?

If I am ever diagnosed with something currently uncurable, but there are experimental stuff in the works, of course I'd like a shot at those experimental drugs, but I hope that me/my family would also not squander whatever assets we have on snakeoil, in which case I'd rather my surviving family was not impoverished in the fight.

I assume that, at least partially, this is why regulations in this area were put in place to begin with.

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

#446

Post by tgv »

A_D_E_P_T wrote: post #262
tgv wrote: post #126

Earlier quoted context omitted.

I remember Softenon. > it wasn't only because of low-hanging fruit. Yeah, right. They had such advanced cancer medication back then. > Give people with fatal diseases a "right to try" drugs that haven't passed safety testing -- and use that data. That data is practically worthless. I'm in favor of having people try out medication, but it will need to be heavily regulated. And we know what happens to regulation: a par…

> "B-but Thalidomide!" This is the reflexive response to every common-sense proposal to roll back the regulatory burden. I'd raise a couple of points in response: First, Thalidomide was never approved in the USA -- for safety reasons. The mechanisms that were in place at the time did their job. Second, the response to Thalidomide was overblown and indeed downright hysterical. "Better to let 100,000 people die of negl…

> It's a matter of quantity.

A large data set of highly biased, uncontrolled data is still useless. You can't model yourself out of the factors that have not been recorded. And believe me, the data you'll get on patients that try experimental medication will be very, very incomplete.

It also won't be a large dataset. How many people have squamous cell carcinoma between now and the moment of approval and are willing and wealthy enough to buy this particular medicine? 100 seems too much already.

> The mechanisms that were in place at the time did their job.

Barely, according to wikipedia.

> Second, the response to Thalidomide was overblown and indeed downright hysterical. "Better to let 100,000 people die of neglect than allow one person to suffer an awful drug reaction" is not rational policy.

Thalidomide was never going to save 100,000 people. It did cause 2500 birth defects in West Germany alone, though, plus an unknown number of abortions. Given that it was legal in 46 countries, the number of people with birth defects must be well over 10,000. This drug isn't going to save 100,000 people either, certainly not in the period until admission.

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

#447

Post by BrandoElFollito »

I saw both of my parents go through cancer (they both, so far, survived), my wife has MS - so I was quite interested in the "perspective" treatments.

You have the whole usual bunch of idiots that will advertise magnetism and cosmic rays to cure you, then new treatments that may or may not be available in your country (but available in others) and finally the trial ones.

I discussed at length with an acquittance of mine who works in the clinic trial branch of a pharma and she first gave me the usual double blind trials explanation (which I am aware of), but then could not really answer why the pharma companies insist in not having people, for free, that would test if the treatment is not obviously lethal (or heavily impacting).

If I was faced with the perspective of dying soon (or going through something like Alzheimer) I could not care less if the treatment is fatal to me. Again: not that is not working (this is something one can assess statistically through normal trials) but that it is clearly harmful.

This would at least be a clear indication of "don't try it" (or "be very careful monitoring for this and that")) if there are enough patients who react badly

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

#448

Post by Broken_Hippo »

darkclouds wrote: post #306
Broken_Hippo wrote: post #266

Earlier quoted context omitted.

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?

That bit about the DSM is a pretty obvious layperson's point of view: It is easy to say that you fit the criteria when you forget that the symptoms need to have negative consequences on your life. And there is 'normal' - normal is a range.

There is a huge difference between being down after a loved one's death and finding yourself feeling that way for no reason or not coping 2 years later.

Considering that - there is no way to answer the last question. That's just a "what if" argument and fails to take into consideration that there is a shortage of mental health experts, and there is absolutely no need for someone to do that sort of thing.

And no, no everyone has a "sexual deviancy fetish", just for the record.

As far as 'treating symptoms'... I have MS. I take medication that slows the disease. If I had fatigue or pain, they would try to treat that too. If it causes depression - which it can - they'd try to treat that. No matter what treatments I get for symptoms, I still have the disease. There is no actual cure.

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

#449

Post by riffraff »

dionidium wrote: post #156
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…

> 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 options want those too, because nobody wants to go through chemotherapy or whatever. I reserve for myself the right to try to save my own life, even if that means some people who can't handle that responsibility make things worse for themselves. I can't get from, "but other…

I don't fundamentally disagree with you, I just understand why, as a society we may choose a different thing.

One of the reasons my father died of cancer quickly is that he was convinced by a chiropractor/osteopath that he had trouble with his back which could be cured with manipulation.

He was not an idiot, but sick people will make bad choices.

The abstract world of "either I die or I try this experimental treatment" is far more blurry, and there lies the problem, in my very humble opinion.

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

#450

Post by A_D_E_P_T »

happysadpanda2 wrote: post #445
A_D_E_P_T wrote: post #343

Earlier quoted context omitted.

> When the odds are against survival, there shouldn't be any rules limiting treatment, if it means even a slightly higher chance of winning. I agree with you. But the FDA would ask you to rigorously define "slightly higher chance of winning" -- and prove it. In the event you cannot do this, they believe that letting you try an experimental drug would be more unethical than letting you die of neglect. So I'd rephrase…

I am not yet done thinking on this area, so my thoughts here are incomplete, but thay said: Would this not also open the door for any snakeoil salesman to prey on what might be medically "hopeless" cases? If I am ever diagnosed with something currently uncurable, but there are experimental stuff in the works, of course I'd like a shot at those experimental drugs, but I hope that me/my family would also not squander w…

> Would this not also open the door for any snakeoil salesman to prey on what might be medically "hopeless" cases?

If you're diagnosed with something uncurable, then by definition you have a doctor or a medical team that has performed the diagnosis and is overseeing your treatment. There is, invariably, some form of treatment; in extremis, even "here, I've booked you into a hospice where they're going to load you up on opiates" is a form of treatment.

Any experimental drugs you're administered would go through your doctor or medical team. If those drugs are transparently snake oil, they should usually be very strongly advised against. If they have a halfway plausible mechanism, doc will probably say, "go ahead, roll the dice."

In any case, the snake oil salesmen aren't preying on sick people alone -- it's the sick person, plus the professionals who are in his corner, plus family and friends, etc. I don't think it would necessarily be trivial to make lots of money peddling something known to have no efficacy.

On a much more general philosophical note, there was much debate in Ancient China between Legalists, who viewed humanity as inherently evil, and Confucianists, who viewed humanity as inherently good. Where you come down in this debate seems to depends on that view. If you believe that men are inherently evil wreckers, you need stringent and indeed draconian regulations to keep them in place. If you believe that men are good, and that lives saved are on balance the greater aim, you should argue against draconian regulations and limitations on treatments.

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