4 ms·

Derek Lowe’s writeup is good: https://www.science.org/content/blog-post/progress-against-pancreatic-cancer-part-one https://www.science.org/content/blog-post/p

by amluto 5mo ago

Derek Lowe’s writeup is good: https://www.science.org/content/blog-post/progress-against-pancreatic-cancer-part-one https://www.science.org/content/blog-post/progress-against-p...

matheist 5mo ago
> 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.
- stouset 5mo ago
  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.
  - 317070 5mo ago
    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-dying-feels-like.html https://www.nytimes.com/video/opinion/100000010826256/what-d...
  - KittenInABox 5mo ago
    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.
    - U4E4 5mo ago
      I find both the honesty and tact of your comment a generous gift. After watching the Sasse interview, reading the parent comment and reading your comment, I’m reminded abstractly how much of the emotional and psychological work of reconciling biological mortality is built on personal cognitive context that a mind-body builds over its cycles living in the world. So much about mortality is shared. But so much of the context for interpreting mortality is radically personal.
    - stouset 5mo ago
      There has been recent attention on what treatments oncologists choose for themselves when diagnosed with terminal illnesses—having seen firsthand what happens to quality of life for their patients—and what members of the general population choose. Doctors tend to choose the treatments that bias quality of life over quantity of life. That’s all I’m getting at here. I personally hope that if it ever comes to it, I will have the strength to choose something like three months of high QoL over one year of grinding daily misery as I have personally seen others do. Having your skin fail to regenerate, bleeding everywhere, and having skin that looks like you’ve had aqua regia poured over it seems to me like a poor quality of life. It sounded like a life of pain and one in which it would be difficult to do a lot of the things that bring me joy. Perhaps it’s not as bad as it sounds, and this is a poor example of it. I’m not judging this guy for his choices; they’re his to make. And maybe I’ve overestimated the amount of pain he’s in. But from the description above, it sounded awful.
- dredmorbius 4mo ago
  Hand-foot syndrome, a/k/a chemotherapy-induced acral erythema, is a similar condition, though there may be another I'm confusing with. <https://en.wikipedia.org/wiki/Chemotherapy-induced_acral_erythema https://en.wikipedia.org/wiki/Chemotherapy-induced_acral_ery...> I'd first run across this decades ago in the context of FDA drugs trials, in which adverse incidents were noted. My understanding at the time was that certain chemotherapies tended to interfere with skin regeneration, particularly in areas subject to high wearing (hands, feet, elbows), or rapid replacement (particularly mucous membranes, lips and mouth especially). Not all chemotherapies are brutal, but some can be quite fiendish, and quality of life is a legitimate consideration when considering whether to proceed with treatment. Informed decisionmaking and consent in a context where expertise is rare and clinicians don't directly experience the adverse effects is difficult at best.

by amluto 5mo ago

Derek Lowe’s writeup is good: https://www.science.org/content/blog-post/progress-against-pancreatic-cancer-part-one https://www.science.org/content/blog-post/progress-against-p...

matheist 5mo ago

> 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.

stouset 5mo ago
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.
- 317070 5mo ago
  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-dying-feels-like.html https://www.nytimes.com/video/opinion/100000010826256/what-d...
- KittenInABox 5mo ago
  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.
  - U4E4 5mo ago
    I find both the honesty and tact of your comment a generous gift. After watching the Sasse interview, reading the parent comment and reading your comment, I’m reminded abstractly how much of the emotional and psychological work of reconciling biological mortality is built on personal cognitive context that a mind-body builds over its cycles living in the world. So much about mortality is shared. But so much of the context for interpreting mortality is radically personal.
  - stouset 5mo ago
    There has been recent attention on what treatments oncologists choose for themselves when diagnosed with terminal illnesses—having seen firsthand what happens to quality of life for their patients—and what members of the general population choose. Doctors tend to choose the treatments that bias quality of life over quantity of life. That’s all I’m getting at here. I personally hope that if it ever comes to it, I will have the strength to choose something like three months of high QoL over one year of grinding daily misery as I have personally seen others do. Having your skin fail to regenerate, bleeding everywhere, and having skin that looks like you’ve had aqua regia poured over it seems to me like a poor quality of life. It sounded like a life of pain and one in which it would be difficult to do a lot of the things that bring me joy. Perhaps it’s not as bad as it sounds, and this is a poor example of it. I’m not judging this guy for his choices; they’re his to make. And maybe I’ve overestimated the amount of pain he’s in. But from the description above, it sounded awful.
dredmorbius 4mo ago
Hand-foot syndrome, a/k/a chemotherapy-induced acral erythema, is a similar condition, though there may be another I'm confusing with. <https://en.wikipedia.org/wiki/Chemotherapy-induced_acral_erythema https://en.wikipedia.org/wiki/Chemotherapy-induced_acral_ery...> I'd first run across this decades ago in the context of FDA drugs trials, in which adverse incidents were noted. My understanding at the time was that certain chemotherapies tended to interfere with skin regeneration, particularly in areas subject to high wearing (hands, feet, elbows), or rapid replacement (particularly mucous membranes, lips and mouth especially). Not all chemotherapies are brutal, but some can be quite fiendish, and quality of life is a legitimate consideration when considering whether to proceed with treatment. Informed decisionmaking and consent in a context where expertise is rare and clinicians don't directly experience the adverse effects is difficult at best.