You should also try immunotherapy (pembrolizumab) with chemo if your CPS is >1% before experimental early phase trials.
I am dying of squamous cell carcinoma, and potential treatments are out of reach
221–230 of 486 posts
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#222How horrible and frustrating. There is a fast-track approval procedure described here, I wonder why it doesn't apply to these treatments? https://www.fda.gov/patients/fast-track-breakthrough-therapy... There is some important context for the following comment: “If anything goes wrong,” he argued, “think how bad it will look that we approved the drug so quickly.” In the 1980s, when the comment was made, there were sti…
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Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#223Earlier quoted context omitted.
C’mon, it’s extremely disingenuous to compare abortion and contraception with untested treatment.
It’s unfair to call treatments untested. Medications are tested extensively. The FDA could work with sponsors to come up with a range of risk profiles and expand access.
I agree: not completely untested, but not tested sufficiently to get an FDA approval. They show early promising results.
BTW people picking such experimental treatments would provide important data points.
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#224There 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…
Is there really a growing sentiment?
If you have a system without problems, I’d be more worried.
Edge cases like OP’s can’t be solved by any system. All systems have problems with things falling through the cracks.
That’s why lobbying exists. So people like OP can bring attention to a specific problem and lobby for it.
Taking about changing the system is missing the point.
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#225I 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…
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!
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#226This 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 antiquated bureaucracy does no good, the true enemy is the disease itself. I believe in science and I hope that someday no one else will needlessly suffer as my brother has.
You be good. I love you.
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#227There 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…
Yes, and the FDA often does get pressured into approving treatments of dubious efficacy: https://arstechnica.com/science/2021/06/a-disgraceful-decisi...
It's easy to understand the logic of desperate patients who will try anything but it doesn't seem right to allow manufacturers to profit hand over fist selling treatments that may not even do anything, or worse, outright cause harm.
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#228Earlier 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…
Id let people use unaprooved treatments labeling them with big warnings in red that this is not approved and may be snakeoil or something like that. Whoever attempts to hide, remove such labels fined severely, possible jail time. Couple of scandals of unaprooved treatments wreaking havok and very few would risk it afterwards.
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#229Earlier 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…
I love the innovative thinking here but I can easily think of a way to game this system. Snake Oil LLC mounts a PR campaign claiming the governmen is trying to shut them down by delaying approvals so they can't get their money so they can't undercut Big Pharma. If Snake Oil (TM) doesn't work, why have patients ponied up $X billion in fees over the years? You have enough stories like this (plus there will inevitably b…
I mean, this is just a “sufficient misinformation” argument that could be levied against literally any kind of policy. No policy can survive sufficient misinformation.
Re: I am dying of squamous cell carcinoma, and potential treatments are out of reach
#230If we block someones ability to try novel procedures, how is that any different from blocking their right to assisted suicide?
But we allow physician assisted suicide.
Strange isn't it? Almost sounds like soylent green. Maybe I'll skip McDonald's this week.