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

#411

Post by sbuttgereit » Sat, Jul 22, 2023, 11:32 PM UTC

Parts of this problem are part of what a company a friend of mine works for is trying to solve:

Part of what they do is they match patients with clinical trials for whom they would be candidates and then facilitate the process on an on-going basis. Apparently this bypasses a number of bureaucratic hurdles which can be faced by patients; for example a patient receiving care from a particular research institution might not be informed about trials being conducted by other, non-affiliated institutions.

Naturally, there's rather more than this to them, but this part sticks out in my mind.

And finally, take what I'm saying with a bit of a grain of salt because I am remembering from casual dinner-time discussions that I had some time ago with my friend. My memory might be bad, they may have changed what they do since I last talked with my friend about it, etc.

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

#412

Post by RandomLensman » Sat, Jul 22, 2023, 11:35 PM UTC

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…

Why do you think you could always evaluate the options properly? What if that is not the case?

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

#413

Post by gerdesj » Sat, Jul 22, 2023, 11:36 PM UTC

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…

"We need to have a much stronger “right to try” presumption"

Quite.

I'm now four years older than my mother was when she passed away after two really exciting years. I can't remember the exact description of the killer but "squamous" was involved. Radio, chemo, surgery bordering on butchery etc. Bout one seemed to be in remission and all clear sounded only to be rescinded a few months later, second run was a negative outcome. Faith healer for a laugh "but you never know" - mum wasn't daft but when you are out of reasonable options, you might as well invent a few more!

However, there is still hope whilst breathe still flows and there is absolutely nothing wrong with hoping for a miracle. They do sometimes happen. Keep fighting and kicking and being a pain and only give up when it is obviously hopeless.

Love you too. Take care.

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

#414

Post by tb_technical » Sat, Jul 22, 2023, 11:36 PM UTC

dkasper wrote: post #35

tb_technical wrote: post #6

What I don't understand is why the FDA doesn't automatically rubber stamp approvals on medicine approved in Canada and the European Union. We all know their medicine is good - so why can't I get it?!

I guess we know that, but why doesn't the EU rubber stamp medicine that's approved in the US? In my opinion it's actually good for there to be independent bodies reviewing things.

We all know why the EU doesn't rubber stamp US medicine...

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

#415

Post by RandomLensman » Sat, Jul 22, 2023, 11:38 PM UTC

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.

Which why in a lot of instances in our lives we are not allowed full personal autonomy. We try to minimize collateral damage as well as self-damage to some extent.

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

#416

Post by AbrahamParangi » Sat, Jul 22, 2023, 11:40 PM UTC

strangescript wrote: post #39

There is no 100% correct answer here. As soon as you speed up the process, there are still going to be people that just miss out, and then we will have people saying 4 months is too long, it should take 2 months, or let AI approve it, etc. Desperation skews perspective. The issue with having a standardized approach to people getting experimental drugs is it opens up its own kind of mini-market unless the implication…

On the contrary, I personally believe it's deeply immoral to tell a dying person to "just wait, it's for your own good".

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

#417

Post by elwell » Sat, Jul 22, 2023, 11:49 PM UTC

abhaynayar wrote: post #77

I read this, and while I felt immense sadness, I will obviously move on with my life soon enough and forget about it. I wondered, if I were ever in the same situation, and someone read what I wrote before dying, they might empathize for a bit, but then they'd move on as well. I just really wish that there's something beyond death, that there's something out there, and that all the suffering and unfairness and randomn…

I believe that Jesus is Lord, and everyone who seeks him finds him.

Matthew 7:17 - "Ask and it will be given to you; seek and you will find; knock and the door will be opened to you."

I was given a very clear sign 17 years ago, not when I asked God to prove himself, but only incidentally when I was seeking his guidance on something; it's nevertheless lasted as an undeniable proof for me. Though, it's better to believe without seeing.

John 20:29 - "...blessed are those who have not seen and yet have believed."

Acts 2:38 - "Repent and be baptized, every one of you, in the name of Jesus Christ for the forgiveness of your sins."

Disclaimer: I do not identify with American/political 'Christianity'.

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

#418

Post by sgseliger23 » Sat, Jul 22, 2023, 11:54 PM UTC

Mizoguchi wrote: post #356

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…

Lost my brother to a carcinoma, a disease that most likely will be successfully treated, cured and even prevented in my lifetime. I feel for your brother but also for you.

Sorry for your loss. I hope you’ve found some peace.

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

#419

Post by xtracto » Sun, Jul 23, 2023, 12:09 AM UTC

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…

When I read the original story and this metformin one, I'm so glad I live in a country where I basically can walk to a pharmacy and by most drugs without a prescription.

I can buy 60 slow release 500mg tablets online for about $10 usd and they'll send them to my home for about 1 extra dollar.

Fuck the government, fuck their controls. If I or someone I love is dying, I'll make sure to try ANY and all options, even if it has a slight chance of working. Everyone has a right to fight for their live.

[1]https://www.fahorro.com/metformina-500-mg-liberacion-prolong...

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

#420

Post by nine_k » Sun, Jul 23, 2023, 12:11 AM UTC

joshuamorton wrote: post #309

newZWhoDis wrote: post #158

Earlier quoted context omitted.

If I’m terminal and my doctor and I want to try the treatment, who are the feds to tell me no? Screw ‘em

We are all, in some sense, terminal. At what number of months or years left to live does your terminality become sufficient to let you try whatever?

It took about 40 years to find efficient ways to treat AIDS.

It took about one year to find efficient ways to treat COVID-19.

So, if you have a condition with a few years of life expectancy remaining, maybe it's worth it to wait for some promising scientific results to turn into an approved medicine that will cure you. If you have a few decades (e.g. the normal life expectancy), even more so. If you doctors give you a few months though, maybe the "try anything" approach is a better gamble.