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

#461

Post by tobarpal » Sun, Jul 23, 2023, 1:46 PM UTC

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…

Before anyone shows up at FDA decision makers' kids soccer practice please consider things from the point of view of an FDA decision maker. They have to make a choice which they know will lead to both type 1 and type 2 errors. For life saving medicine, when the decision isn't clear, both type 1 and type 2 errors are awful. It's likely they already feel the burden of responsibility.

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

#462

Post by eilertokyo » Sun, Jul 23, 2023, 1:50 PM UTC

abecedarius wrote: post #257

eilertokyo wrote: post #155

Unclear to me why clinical trials seem unavailable to him, which is how he would gain access to these treatments. The major cancer centers generally will have options for his exact situation, though sometimes they require he finish conventional and salvage treatments first.

He wrote "The FDA was loathe to approve initial mRNA human trials". The implication seems to be that if not for this added delay, this potential treatment would be further along.

That doesn’t make a ton of sense, because there are plenty of phase 1 early stage trials at the largest medical centers in the country that use pre-“FDA approved drugs“. The whole purpose of the early trials is for the companies to go get FDA approval.

If he said he went to Mayo, MD Anderson, Harvard, Sloan Kettering, and none of the trials were available to him that would make a little more sense. But a great number of the trials in his disease site are for treatment refractory patients, so it’s pretty surprising there’s no apparent trials for him.

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

#463

Post by baggy_trough » Sun, Jul 23, 2023, 1:59 PM UTC

CogitoCogito wrote: post #314

can16358p wrote: post #188

Earlier quoted context omitted.

Couldn't agree more. There is literally nothing to lose, and potential to save a life. Blocking this is effectively murder.

Drug policy is larger than this single man. There are trade offs with different approaches here. “There is literally nothing to lose” is simply false. Restrictions against selling whatever to dying patients is because people _will_ take advantage of them and sell snake oil. If you’re okay with that, why not just let people steal from those terminally ill? My dad recently died. There are always new treatments being st…

It literally is a conspiracy where a cold bureaucracy is letting people die. That is exactly what is happening.

You appear to think that it is worth letting people die to avoid quack doctors being able to sell them snake oil. I prefer to leave it up to the patient to decide. They are the ones with skin in the game.

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

#464

Post by CogitoCogito » Sun, Jul 23, 2023, 3:23 PM UTC

baggy_trough wrote: post #463

CogitoCogito wrote: post #314

Earlier quoted context omitted.

Drug policy is larger than this single man. There are trade offs with different approaches here. “There is literally nothing to lose” is simply false. Restrictions against selling whatever to dying patients is because people _will_ take advantage of them and sell snake oil. If you’re okay with that, why not just let people steal from those terminally ill? My dad recently died. There are always new treatments being st…

It literally is a conspiracy where a cold bureaucracy is letting people die. That is exactly what is happening. You appear to think that it is worth letting people die to avoid quack doctors being able to sell them snake oil. I prefer to leave it up to the patient to decide. They are the ones with skin in the game.

> It literally is a conspiracy where a cold bureaucracy is letting people die. That is exactly what is happening.

It saddens me that you believe such nonsense.

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

#465

Post by baggy_trough » Sun, Jul 23, 2023, 4:10 PM UTC

CogitoCogito wrote: post #464

baggy_trough wrote: post #463

Earlier quoted context omitted.

It literally is a conspiracy where a cold bureaucracy is letting people die. That is exactly what is happening. You appear to think that it is worth letting people die to avoid quack doctors being able to sell them snake oil. I prefer to leave it up to the patient to decide. They are the ones with skin in the game.

> It literally is a conspiracy where a cold bureaucracy is letting people die. That is exactly what is happening. It saddens me that you believe such nonsense.

Can you clarify what is nonsense about it?

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

#466

Post by baggy_trough » Sun, Jul 23, 2023, 4:12 PM UTC

kortex wrote: post #307

baggy_trough wrote: post #268

Earlier quoted context omitted.

You are killing people under the guise of helping them.

Giving someone Treatment X likely means they won't be pursuing Y, whether it be to avoid polypharmacy drug interactions, or simply because the patient prefers X's side effect profile to Y. Y may be the proven treatment, with worse side effects but better efficacy. Even if the doctors inform the patient "X may not work at all and may make it worse", the patient might still choose it. "What's the harm?" you say. The pr…

That's better than interfering with the rights of a patient to decide what to do with their body.

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

#467

Post by krisoft » Sun, Jul 23, 2023, 4:33 PM UTC

CogitoCogito wrote: post #451

krisoft wrote: post #394

Earlier quoted context omitted.

> 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…

> What do you mean “detain” patients? I meant to write "certain". > How can drug companies “bias the results”? Choosing appropriate patients will lead to longer survival rate unrelated to the drug in question. The whole point of double-blind studies is to avoid this. > 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 mis…

> 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, however, don't seem to understand statistics or economics.

And you are abrasive and rude. These exclamations don’t add much of anything to the conversation. If there is something particular I am overlooking please adress that instead of speculating about the areas you think I am deficient in. Thank you.

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 drug manufacturer giving the patient the drug, and if so under what circumstances.

I am saying: “yes, we should stop the drug manufacturer if the drug is not proven to be effective yet, and he is asking for money for it. There is too much of a chance that the drug manufacturer is a snake oil salesman in disguise and only wants to extract the wealth from the patient and the patient’s family. But if he is honest they can give the drug for free.”

In turn you are saying. “We should stop the drug manufacturer giving the unproven drug to the dying patient even if they are giving it for free, because it is possible that they cherry picked this patient. So though luck dear patient, you must die in the name of scientific rigour. I hope you understand.”

Do I understand you right?

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

#468

Post by skilled » Sun, Jul 23, 2023, 4:58 PM UTC

jacquesm wrote: post #453

skilled wrote: post #431

Earlier quoted context omitted.

The smart money? Do you think that Buddhists make up the whole idea of succession just for show?

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.

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

#469

Post by CogitoCogito » Sun, Jul 23, 2023, 5:14 PM UTC

krisoft wrote: post #467

CogitoCogito wrote: post #451

Earlier quoted context omitted.

> What do you mean “detain” patients? I meant to write "certain". > How can drug companies “bias the results”? Choosing appropriate patients will lead to longer survival rate unrelated to the drug in question. The whole point of double-blind studies is to avoid this. > 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 mis…

> 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 drug manufacturer giving the patient the drug, and if so under what circumstances.

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

> Do I understand you right?

No you seem not to be. Giving away drugs is fine and largely already possible. Choosing patients and then pretending that the data gathered has any reasonable statistical validity when considering general approval of a drug is totally crazy. I think there is essentially zero chance the FDA would ever go for an idea with such overt conflicts of interest so I'm happy your idea will never turn into reality.

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

#470

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

dashmeet wrote: post #336

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…

If you're okay with it, could you expand/name the condition you thought you had, the actual one, and the medication(s)? Never know, might help someone else out

I'm a bit concerned about my privacy but the condition is herpes virus infection of the eye. The similar condition is Thygeson's disease. The drug in question (that I could not get) is called Viroptic which for some reason helps with both conditions (despite them not being related). Thygeson's is thought to be more of an immune system issue.

So if you've been diagnosed with herpes, and anti-virals don't seem to help, maybe you don't have herpes. If you do have herpes of the eye there are good drugs approved in Europe but not in the North America (though there are likely some approved drugs in the US which will still help - it's complicated).