> The company says that the drug was generally well tolerated, but that’s on the oncology scale.
> ...
> He’s been on daraxonrasib since early this year, and describes it this way: “. . .it’s a nasty drug. It causes crazy stuff like my body can’t grow skin and so I bleed all out of a whole bunch of parts of me that shouldn’t be bleeding” If you go to that link above, be prepared, because he also looks like he’s had aqua regia thrown all over him (and apparently feels a bit like that, too). But his tumor volume has gone down by about 75%, and there’s a very strong chance that he wouldn’t still be alive at all without having gone on the drug.
I am in the enviable position to not be actively dying from an untreatable disease, so obviously haven’t seen things from the other side of this sort of situation.
But to me, that doesn’t sound like a life worth living. Obviously different people will have different thresholds for when to throw in the towel, and I’m glad that we are finding medicines to allow people to make the choices that align with their own drives.
Still, I can’t help but think that this is the sort of life virtually none of us would choose to inflict on our pets, even if cost was no option. We give them a far more graceful exit from this world than we give ourselves, and I think that’s worth considering.
I am truly terrified of death. I wish I wasn’t, but an infinity of nonexistence somehow seems unbearable (though, obviously, it will be trivial to bear in practice). I still hope that when my time comes, I will find the strength to exit gracefully if my life ever gets to the point where each day is filled with pain and discomfort, and where I can’t actually take part in any of the things I enjoy about life.
I hope that this is only a temporary treatment for this guy to get the tumor to a point where it can be operated on or treated with other therapies. Because his life sounds like a living hell and that breaks my heart.
I mean, he looks uncomfortable, but you would be surprised at how much people can tolerate when there is no alternative. Here is an interview I found [0].
I think he looks better than every 90 year old. But he also mentions that it still is terminal.
This may sound condescending but: you sound young, not disabled, and extremely sheltered from being exposed to disabled people.
I am in a position to be intimately familiar with illness. I will say that health is a spectrum and the mind is incredibly resilient. You will surprise yourself as you inevitably age how much your mind will adapt to always hurting. There is more to life than body discomfort. This patient sounds like he has his faculties and is making an informed decision to continue living, because his life is worth the discomfort he is going through. I am reminded of a line along the lines of every day you experience, no matter how terrible, is very likely a day that someone else yesterday would have desperately wanted.
> Still, I can’t help but think that this is the sort of life virtually none of us would choose to inflict on our pets, even if cost was no option. We give them a far more graceful exit from this world than we give ourselves, and I think that’s worth considering.
I often think about this, wondering how many of those animals would have chosen death if given the choice, and how often it is simply a way to spare the owner from seeing something that upsets them.
I hope they can get this to people quickly. Someone I love has been diagnosed with stage 3 end of Feb this year and it's utter hell. For everyone, not just the patient.
While not fully approved, the company has early access available to people who meet the treatment criteria and would potentially benefit. Their HCP should evaluate this (it's not all types of pancreatic cancer, and it's not a silver bullet - but it looks like its double the survival time than current chemo). Hopefully this evolves into a new class of treatment.
Honestly. for the ~2 months my mum had between a totally out-of-the-blue stage 4 melanoma diagnosis and the day she died in the hospice, I don’t think there’s anything she would have wanted less than to endure more of that existence, if someone had offered her that pill.
"survival" is the wrong word; its terminal. honestly the drugs and chemo and treatments they put pancreatic patients through for possibly a few more (not very nice) weeks is almost criminal. a good doctor will tell you to go make the most of those 3 months post diagnosis. that said its nice to see progress against one of the worst cancers out there and i hope it leads to genuine breakthroughs. but this drug is nothing anybody wants, even if they think they do
The operative term isn't simply "survival" but "survival time", that is, the time, post-diagnosis, a patient cohort may be expected to survive on average. It is a term of art.
It's also meaningful insofar as extended survival time suggests progress against the disease mechanism. This may not mean long-term survival for present sufferers of this particular disease, but may suggest future research which is more promising, or if this route hits a wall on any additional outcomes improvements, limitations to this approach. The advance of knowledge is a benefit, regardless of ultimate patient outcomes.
(Where the trade-off in knowledge gains vs. patient outcomes lies is yet another realm of medical ethics.)
Language-lawyering the term is however specious. If you want to comment on quality of life or other matters, those are separate and meritorious discussions. You're embarking on them in a manner that's not likely to be especially conducive however.
Derek Lowe’s writeup is good: https://www.science.org/content/blog-post/progress-against-p...
> The company says that the drug was generally well tolerated, but that’s on the oncology scale.
> ...
> He’s been on daraxonrasib since early this year, and describes it this way: “. . .it’s a nasty drug. It causes crazy stuff like my body can’t grow skin and so I bleed all out of a whole bunch of parts of me that shouldn’t be bleeding” If you go to that link above, be prepared, because he also looks like he’s had aqua regia thrown all over him (and apparently feels a bit like that, too). But his tumor volume has gone down by about 75%, and there’s a very strong chance that he wouldn’t still be alive at all without having gone on the drug.
I am in the enviable position to not be actively dying from an untreatable disease, so obviously haven’t seen things from the other side of this sort of situation.
But to me, that doesn’t sound like a life worth living. Obviously different people will have different thresholds for when to throw in the towel, and I’m glad that we are finding medicines to allow people to make the choices that align with their own drives.
Still, I can’t help but think that this is the sort of life virtually none of us would choose to inflict on our pets, even if cost was no option. We give them a far more graceful exit from this world than we give ourselves, and I think that’s worth considering.
I am truly terrified of death. I wish I wasn’t, but an infinity of nonexistence somehow seems unbearable (though, obviously, it will be trivial to bear in practice). I still hope that when my time comes, I will find the strength to exit gracefully if my life ever gets to the point where each day is filled with pain and discomfort, and where I can’t actually take part in any of the things I enjoy about life.
I hope that this is only a temporary treatment for this guy to get the tumor to a point where it can be operated on or treated with other therapies. Because his life sounds like a living hell and that breaks my heart.
I mean, he looks uncomfortable, but you would be surprised at how much people can tolerate when there is no alternative. Here is an interview I found [0].
I think he looks better than every 90 year old. But he also mentions that it still is terminal.
[0] https://www.nytimes.com/video/opinion/100000010826256/what-d...
This may sound condescending but: you sound young, not disabled, and extremely sheltered from being exposed to disabled people.
I am in a position to be intimately familiar with illness. I will say that health is a spectrum and the mind is incredibly resilient. You will surprise yourself as you inevitably age how much your mind will adapt to always hurting. There is more to life than body discomfort. This patient sounds like he has his faculties and is making an informed decision to continue living, because his life is worth the discomfort he is going through. I am reminded of a line along the lines of every day you experience, no matter how terrible, is very likely a day that someone else yesterday would have desperately wanted.
> Still, I can’t help but think that this is the sort of life virtually none of us would choose to inflict on our pets, even if cost was no option. We give them a far more graceful exit from this world than we give ourselves, and I think that’s worth considering.
I often think about this, wondering how many of those animals would have chosen death if given the choice, and how often it is simply a way to spare the owner from seeing something that upsets them.
The founders of Lovable and Builder.ai individually received more funds than the whole group of the researchers behind this medicine...
That’s like talking about the ROI of a winning lottery ticket.
We can’t know ahead of time which medicine works so you need to fund many teams at the beginning.
If you want to see what the side effects look like, look at ex Senator Ben Sasse: https://youtu.be/7CFo6-6BN9k?si=2B3dqB4rOhAnPiZl
Paper: https://www.nejm.org/doi/full/10.1056/NEJMoa2605555?query=fe...
Totally naive question: is this a situation where stacking the drug with chemo might be even better?
I hope they can get this to people quickly. Someone I love has been diagnosed with stage 3 end of Feb this year and it's utter hell. For everyone, not just the patient.
While not fully approved, the company has early access available to people who meet the treatment criteria and would potentially benefit. Their HCP should evaluate this (it's not all types of pancreatic cancer, and it's not a silver bullet - but it looks like its double the survival time than current chemo). Hopefully this evolves into a new class of treatment.
Honestly. for the ~2 months my mum had between a totally out-of-the-blue stage 4 melanoma diagnosis and the day she died in the hospice, I don’t think there’s anything she would have wanted less than to endure more of that existence, if someone had offered her that pill.
Unfortunately, it seems that this just provides an extra year of life or so.
Of course this is better than nothing, but it is not a cure.
Moreover, the link provided by another poster to an article that discusses the side effects, shows that they are unpleasant.
Still, an extra year of life may provide a chance to survive until the appearance of a better solution.
"survival" is the wrong word; its terminal. honestly the drugs and chemo and treatments they put pancreatic patients through for possibly a few more (not very nice) weeks is almost criminal. a good doctor will tell you to go make the most of those 3 months post diagnosis. that said its nice to see progress against one of the worst cancers out there and i hope it leads to genuine breakthroughs. but this drug is nothing anybody wants, even if they think they do
> "survival" is the wrong word; its terminal.
No one actually knows that one way or the other since some patients were still taking it after the study ended according to the article.
The operative term isn't simply "survival" but "survival time", that is, the time, post-diagnosis, a patient cohort may be expected to survive on average. It is a term of art.
It's also meaningful insofar as extended survival time suggests progress against the disease mechanism. This may not mean long-term survival for present sufferers of this particular disease, but may suggest future research which is more promising, or if this route hits a wall on any additional outcomes improvements, limitations to this approach. The advance of knowledge is a benefit, regardless of ultimate patient outcomes.
(Where the trade-off in knowledge gains vs. patient outcomes lies is yet another realm of medical ethics.)
Language-lawyering the term is however specious. If you want to comment on quality of life or other matters, those are separate and meritorious discussions. You're embarking on them in a manner that's not likely to be especially conducive however.
Source article for those interested:
https://www.nejm.org/doi/full/10.1056/NEJMoa2505783
Paywalled but has a free access option if you make an account.