5 ms·

Median survival is just that: half the people have less, half the people have more. Since you are not an oncologist, could you please cite the recent paper in

by ngneer 3y ago

Median survival is just that: half the people have less, half the people have more. Since you are not an oncologist, could you please cite the recent paper in question? That would be helpful for understanding the context in which the statement was made that led to your (insensitive) interpretation.

wpietri 3y ago
Protip: you can find quotes by putting them into Google, which is what I just did: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7794906/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7794906/ Yes, half the people have less, half more. But even the "more" half is very bad news. 5-year survival is ~4%. My dad made it something like 16 months, although his quality of life was quite poor for most of that; the tumor had already caused some neurological complications, and the surgery kicked off frequent seizures that were debilitating. From what I've read, poor quality of life is typical of aggressive gliomas, even when in nominal remission. And then there's the half who have less; my mom got about 4 months, most of which was taken up with radiation and chemo. Please let me know in the future if I can bring up any of my prose to your sensitivity standards. That's a big concern of mine when writing on the internet.
- ngneer 3y ago
  I am very sorry for your loss. This is clearly a sensitive and emotional subject for many, thus my comment. I did not mean to offend you, but can see that I have, and apologize for that. I should have known better. Thanks for sharing the link, very helpful to understand the context for your statements regarding poor prognosis, specifically 5-year survival and the various new promising approaches being attempted.
  - fasteo 3y ago
    >>> I did not mean to offend you, but can see that I have, and apologize for that. I should have known better. Reading his first comment, there is no way you would have known about his loss.
    - ngneer 3y ago
      Right. I think the "they're fucked" threw me off, because "they" sounds impersonal, as though talking about others without having had the personal experience. However, that very phrase should have alerted me to the fact that anyone who knows as much about the topic and uses strong language is very likely emotionally involved, and therefore it is wiser to tread lightly. This is what I should have known better, and will improve upon for next time.
    - wpietri 3y ago
      Sure, but so what? In most of the world's conversations, if somebody talks about a thing, people tend to think, "Oh, maybe they know about the thing." Here on HN, though, and wherever reply guys roam free, you see a lot of the opposite. "I'll just assume I know way more about this than the person I'm going to run my mouth at." I don't think it should be my job to preemptively trot out my credentials every time I whip up a paragraph on something. Especially when, as here, those credentials are not only some of the most painful episodes in my life, but are also guaranteed conversational bombs. Instead, maybe we could have a norm of assuming that people aren't total idiots.
  - datapolitical 3y ago
    His comment was frank, but it wasn’t insensitive. It’s important to be able to distinguish between those two things.
  - nextaccountic 3y ago
    Just for the record, the only objectionable part of your comment (IMO) was the "(insentive)" part, because it assumed the worst
- ed94133 3y ago
  So sorry to hear both your parents had glioblastoma. We are struggling with this in our family now. Given how rare GBM is, did anyone try to identify possible causal factors in your parents’ case?
  - wpietri 3y ago
    Some halfhearted effort was made. But they really only lived in the same place 5 or 6 years, and there was no obvious cause. Since they both had left temporal lobe tumors, the area involved in language, and since they were both good with words, I joke that we all just overused that part of our brain, so that's what'll be coming for me too. My best guess is that I just got unlucky here, but the causes are not well understood, so who knows.
- refracture 3y ago
  I feel for you. My dad was on the less side of that, having died just shy of three months from onset of symptoms. The tumor was located in a region called the thalamus, they said in all likelihood they would never be able to resection it without causing more problems than just leaving it be and sticking to chemo.. not that it mattered in the end, the chemo compromised his immune system and he perished to fungal pneumonia.
  - wpietri 3y ago
    Yeah, it's just a bucket of terrible choices, isn't it? People can do without a leg or a lung, but the brain is so delicate and subtle that there are no good options. Personally, if this ends up being my fate, I'm doing it the way Brittany Maynard did. Throw a good party while I'm still of sound mind and exit on my own terms. [1] My sympathies to you and your family. It's such a hard thing. And having it go that fast can just be overwhelming. [1] https://en.wikipedia.org/wiki/Brittany_Maynard https://en.wikipedia.org/wiki/Brittany_Maynard
    - refracture 3y ago
      I can't even begin to describe how upsetting it is that anybody would deny us the right to a dignified end citing their own beliefs and ignoring our own.
- Affric 3y ago
  I am sorry for your loss. Thank you for sharing all this here. It has really put the article into perspective.

by ngneer 3y ago

wpietri 3y ago

Protip: you can find quotes by putting them into Google, which is what I just did: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7794906/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7794906/ Yes, half the people have less, half more. But even the "more" half is very bad news. 5-year survival is ~4%. My dad made it something like 16 months, although his quality of life was quite poor for most of that; the tumor had already caused some neurological complications, and the surgery kicked off frequent seizures that were debilitating. From what I've read, poor quality of life is typical of aggressive gliomas, even when in nominal remission. And then there's the half who have less; my mom got about 4 months, most of which was taken up with radiation and chemo. Please let me know in the future if I can bring up any of my prose to your sensitivity standards. That's a big concern of mine when writing on the internet.

ngneer 3y ago
I am very sorry for your loss. This is clearly a sensitive and emotional subject for many, thus my comment. I did not mean to offend you, but can see that I have, and apologize for that. I should have known better. Thanks for sharing the link, very helpful to understand the context for your statements regarding poor prognosis, specifically 5-year survival and the various new promising approaches being attempted.
- fasteo 3y ago
  >>> I did not mean to offend you, but can see that I have, and apologize for that. I should have known better. Reading his first comment, there is no way you would have known about his loss.
  - ngneer 3y ago
    Right. I think the "they're fucked" threw me off, because "they" sounds impersonal, as though talking about others without having had the personal experience. However, that very phrase should have alerted me to the fact that anyone who knows as much about the topic and uses strong language is very likely emotionally involved, and therefore it is wiser to tread lightly. This is what I should have known better, and will improve upon for next time.
  - wpietri 3y ago
    Sure, but so what? In most of the world's conversations, if somebody talks about a thing, people tend to think, "Oh, maybe they know about the thing." Here on HN, though, and wherever reply guys roam free, you see a lot of the opposite. "I'll just assume I know way more about this than the person I'm going to run my mouth at." I don't think it should be my job to preemptively trot out my credentials every time I whip up a paragraph on something. Especially when, as here, those credentials are not only some of the most painful episodes in my life, but are also guaranteed conversational bombs. Instead, maybe we could have a norm of assuming that people aren't total idiots.
- datapolitical 3y ago
  His comment was frank, but it wasn’t insensitive. It’s important to be able to distinguish between those two things.
- nextaccountic 3y ago
  Just for the record, the only objectionable part of your comment (IMO) was the "(insentive)" part, because it assumed the worst
ed94133 3y ago
So sorry to hear both your parents had glioblastoma. We are struggling with this in our family now. Given how rare GBM is, did anyone try to identify possible causal factors in your parents’ case?
- wpietri 3y ago
  Some halfhearted effort was made. But they really only lived in the same place 5 or 6 years, and there was no obvious cause. Since they both had left temporal lobe tumors, the area involved in language, and since they were both good with words, I joke that we all just overused that part of our brain, so that's what'll be coming for me too. My best guess is that I just got unlucky here, but the causes are not well understood, so who knows.
refracture 3y ago
I feel for you. My dad was on the less side of that, having died just shy of three months from onset of symptoms. The tumor was located in a region called the thalamus, they said in all likelihood they would never be able to resection it without causing more problems than just leaving it be and sticking to chemo.. not that it mattered in the end, the chemo compromised his immune system and he perished to fungal pneumonia.
- wpietri 3y ago
  Yeah, it's just a bucket of terrible choices, isn't it? People can do without a leg or a lung, but the brain is so delicate and subtle that there are no good options. Personally, if this ends up being my fate, I'm doing it the way Brittany Maynard did. Throw a good party while I'm still of sound mind and exit on my own terms. [1] My sympathies to you and your family. It's such a hard thing. And having it go that fast can just be overwhelming. [1] https://en.wikipedia.org/wiki/Brittany_Maynard https://en.wikipedia.org/wiki/Brittany_Maynard
  - refracture 3y ago
    I can't even begin to describe how upsetting it is that anybody would deny us the right to a dignified end citing their own beliefs and ignoring our own.
Affric 3y ago
I am sorry for your loss. Thank you for sharing all this here. It has really put the article into perspective.