6 ms·

I would like to see a clinical trial with patients who have Stage 4 disease being treated with multiple immunotherapies, up to 5 or 6 IV and oral immunotherapie

by JohnMD 2y ago

I would like to see a clinical trial with patients who have Stage 4 disease being treated with multiple immunotherapies, up to 5 or 6 IV and oral immunotherapies. Why are we holding back in a population with poor prognosis?? As far as legislation, we should pass "Right to Try" laws. Allowing anyone with Stage 3 or 4 to pick an immunotherapy regardless of whether it's been approved. We should never allow hope to die!

s1artibartfast 2y ago
Why can't you start a trial and do just that? Doctors have discretion up to the practical limit of being sued by their patients.
- LadyCailin 2y ago
  Or their estate.
lumost 2y ago
There is a bound on the degree to which terminal patients are willing to be human guinea pigs, and a bound on which the data is statistically useful to anyone. I’ve read many reports of terminal patients who wish that they hadn’t wasted the last few months of their healthspan searching for Hail Mary treatment options. If you were to ask yourself what you would do with 1-3 months of healthy life left, would you spend it in a hospital on chemo?
- drysine 2y ago
  If I had a chance of beating cancer and extending my life by a lot, I'd rather die fighting.
  - programjames 2y ago
    You're currently dying of the "being human" cancer. Are you working on or donating to anti-aging research, or do you prefer to do other things with your time? It just comes down to your discount factor. Based on inflation, it's typically about 0.95/year, so you would expect to care about ~10% as much for things 50 years in the future. This means if you had a ~10% better quality of life not working on anti-aging, you're guaranteed to be better off. In reality, you should hedge your bets; if everyone spent just a little time on the disease, we could cure "being human". The same applies to dying fighting cancer. You should be willing to do some experimental procedures, but not if it eliminates your happiness for the rest of your life.
    - somenameforme 2y ago
      One assumption people making such arguments implicitly assume is that such things are possible, which is not a given. It could well be that you could have infinite money, a billion scientists, and make no progress whatsoever. And I'm only referring to cancer there. Anti-aging seems even less likely. I think there's a lot of cognitive dissonance on this topic from people like Ray Kurzweil. The overwhelming majority of increases in life expectancy over the past millennia have come from reductions in childhood mortality. It's not like people in the past just hit 40 years old and randomly keeled over. But rather people were quite unlikely to make it out of childhood. If one person dies in childhood and the other at 80, you have a life expectancy of 40 years old but it's rather misleading! In reality the average life expectancy (for those that made it out of childhood) has remained pretty similar for millennia - around 70 years. [1] So for instance the Founding Fathers died at an average age of 72. John Adams lived to 90, and Sam Adams/Jay/Franklin/Madison died in their 80s. The only two who died before their 60s were Hamilton, who was killed in a duel, and Hancock, who'd had poor health throughout most of his life. This is a nice sample because you had Founding Fathers as young as 18 (Monroe) when the Declaration of Independence was signed, so we're certainly not seeing a surviorship bias. They were certainly wealthier than average, but all the wealth in the world doesn't matter when state of the art healthcare was doing things like treating infections by bloodletting (including by leeches) to get rid of 'bad blood' or 'balance the 4 humors.' [1] - https://aeon.co/ideas/think-everyone-died-young-in-ancient-societies-think-again https://aeon.co/ideas/think-everyone-died-young-in-ancient-s...
      - kelnos 2y ago
        Not arguing against your general point that post-childhood life expectancy has always been fairly high, but I don't think rich aristocrats make for a "nice sample" when talking about longevity.
        somenameforme 2y ago
        Most of the logic about endless life expectancy take improvement in healthcare as the fundamental driving factor. And in the past, the wealthy were no better off than the impoverished here because you couldn't buy that which didn't exist. Germ theory didn't exist, let alone antibiotics, even hand washing as a thing before surgery didn't yet exist. And what I was alluding to in my comment was what happened to George Washington. He died at a relatively early age of 67 of a throat infection, or of the 5 pints of blood that was taken from him to 'cure' that infection leaving portraits of him on his death bed as being white as a ghost.
  - jajko 2y ago
    I would not. I would focus on family and friends, leaving as little mess to work through for them after my passing and making the best out of remaining days. Quality > quantity for me, always.
    - kelnos 2y ago
      There are always thresholds, though. Would you accept a 10% decrease in the quality of your life in exchange for an extra year? I probably would. I probably still would if that was a 20% decrease. But I probably wouldn't go for that extra year if I had to accept a 90% decrease in the quality of my life. The threshold is a personal decision. There are no right or wrong answers. We should even indulge someone who would accept that 90% decrease for an extra year. That should be their choice, and even if I wouldn't make it myself, that's neither here nor there.
      - rsynnott 2y ago
        > Would you accept a 10% decrease in the quality of your life in exchange for an extra year? I probably would. I probably still would if that was a 20% decrease. But I probably wouldn't go for that extra year if I had to accept a 90% decrease in the quality of my life. The context is _clinical trials_, tho, so that's not generally what's on offer.
  - agumonkey 2y ago
    I would believe that for many people, simply having a chance at fighting would improve the odds.
- deadbabe 2y ago
  You are not just fighting for yourself, you are fighting for all future generations by helping to contribute toward finding a cure, even if you don’t benefit it from it. It is a noble cause, like going to war to defend your country. If you only want to contribute toward things if they benefit you, then the real cancer is you.
  - llamaimperative 2y ago
    This is extremely goofy. No one is obligated to try experimental drugs to benefit other people. And I work in clinical trials! It is heroic to volunteer oneself into a clinical trial. In fact, if you feel so strongly about it: you can go do so literally right now. I'm happy to help facilitate.
- 1270018080 2y ago
  Of course you would make different choices if you could predict the future. But if I only have 1-3 months to live, I am going for Hail Mary treatment options to try to extend that (because I can't predict the future).
- cancerhacker 2y ago
  I’m no longer NED from Stage IV colon cancer (first DX 2014), and now it’s returned and inoperable. I was given an option to add Cetuximab which I’d had previously- but the side effects from that were so bad for me that it absolutely isn’t worth it to me to add a few months, but live in misery.
robbiep 2y ago
Whilst this would be great, can I just temper this with a little understanding of how significant some of the side effects of the immunotherapies can be. There are significant limits on how much you can stress an already significantly stressed body and immunotherapy side effects can be WILD

by JohnMD 2y ago

s1artibartfast 2y ago

Why can't you start a trial and do just that? Doctors have discretion up to the practical limit of being sued by their patients.

LadyCailin 2y ago
Or their estate.

lumost 2y ago

There is a bound on the degree to which terminal patients are willing to be human guinea pigs, and a bound on which the data is statistically useful to anyone. I’ve read many reports of terminal patients who wish that they hadn’t wasted the last few months of their healthspan searching for Hail Mary treatment options. If you were to ask yourself what you would do with 1-3 months of healthy life left, would you spend it in a hospital on chemo?

drysine 2y ago
If I had a chance of beating cancer and extending my life by a lot, I'd rather die fighting.
- programjames 2y ago
  You're currently dying of the "being human" cancer. Are you working on or donating to anti-aging research, or do you prefer to do other things with your time? It just comes down to your discount factor. Based on inflation, it's typically about 0.95/year, so you would expect to care about ~10% as much for things 50 years in the future. This means if you had a ~10% better quality of life not working on anti-aging, you're guaranteed to be better off. In reality, you should hedge your bets; if everyone spent just a little time on the disease, we could cure "being human". The same applies to dying fighting cancer. You should be willing to do some experimental procedures, but not if it eliminates your happiness for the rest of your life.
  - somenameforme 2y ago
    One assumption people making such arguments implicitly assume is that such things are possible, which is not a given. It could well be that you could have infinite money, a billion scientists, and make no progress whatsoever. And I'm only referring to cancer there. Anti-aging seems even less likely. I think there's a lot of cognitive dissonance on this topic from people like Ray Kurzweil. The overwhelming majority of increases in life expectancy over the past millennia have come from reductions in childhood mortality. It's not like people in the past just hit 40 years old and randomly keeled over. But rather people were quite unlikely to make it out of childhood. If one person dies in childhood and the other at 80, you have a life expectancy of 40 years old but it's rather misleading! In reality the average life expectancy (for those that made it out of childhood) has remained pretty similar for millennia - around 70 years. [1] So for instance the Founding Fathers died at an average age of 72. John Adams lived to 90, and Sam Adams/Jay/Franklin/Madison died in their 80s. The only two who died before their 60s were Hamilton, who was killed in a duel, and Hancock, who'd had poor health throughout most of his life. This is a nice sample because you had Founding Fathers as young as 18 (Monroe) when the Declaration of Independence was signed, so we're certainly not seeing a surviorship bias. They were certainly wealthier than average, but all the wealth in the world doesn't matter when state of the art healthcare was doing things like treating infections by bloodletting (including by leeches) to get rid of 'bad blood' or 'balance the 4 humors.' [1] - https://aeon.co/ideas/think-everyone-died-young-in-ancient-societies-think-again https://aeon.co/ideas/think-everyone-died-young-in-ancient-s...
    - kelnos 2y ago
      Not arguing against your general point that post-childhood life expectancy has always been fairly high, but I don't think rich aristocrats make for a "nice sample" when talking about longevity.
      - somenameforme 2y ago
        Most of the logic about endless life expectancy take improvement in healthcare as the fundamental driving factor. And in the past, the wealthy were no better off than the impoverished here because you couldn't buy that which didn't exist. Germ theory didn't exist, let alone antibiotics, even hand washing as a thing before surgery didn't yet exist. And what I was alluding to in my comment was what happened to George Washington. He died at a relatively early age of 67 of a throat infection, or of the 5 pints of blood that was taken from him to 'cure' that infection leaving portraits of him on his death bed as being white as a ghost.
- jajko 2y ago
  I would not. I would focus on family and friends, leaving as little mess to work through for them after my passing and making the best out of remaining days. Quality > quantity for me, always.
  - kelnos 2y ago
    There are always thresholds, though. Would you accept a 10% decrease in the quality of your life in exchange for an extra year? I probably would. I probably still would if that was a 20% decrease. But I probably wouldn't go for that extra year if I had to accept a 90% decrease in the quality of my life. The threshold is a personal decision. There are no right or wrong answers. We should even indulge someone who would accept that 90% decrease for an extra year. That should be their choice, and even if I wouldn't make it myself, that's neither here nor there.
    - rsynnott 2y ago
      > Would you accept a 10% decrease in the quality of your life in exchange for an extra year? I probably would. I probably still would if that was a 20% decrease. But I probably wouldn't go for that extra year if I had to accept a 90% decrease in the quality of my life. The context is _clinical trials_, tho, so that's not generally what's on offer.
- agumonkey 2y ago
  I would believe that for many people, simply having a chance at fighting would improve the odds.
deadbabe 2y ago
You are not just fighting for yourself, you are fighting for all future generations by helping to contribute toward finding a cure, even if you don’t benefit it from it. It is a noble cause, like going to war to defend your country. If you only want to contribute toward things if they benefit you, then the real cancer is you.
- llamaimperative 2y ago
  This is extremely goofy. No one is obligated to try experimental drugs to benefit other people. And I work in clinical trials! It is heroic to volunteer oneself into a clinical trial. In fact, if you feel so strongly about it: you can go do so literally right now. I'm happy to help facilitate.
1270018080 2y ago
Of course you would make different choices if you could predict the future. But if I only have 1-3 months to live, I am going for Hail Mary treatment options to try to extend that (because I can't predict the future).
cancerhacker 2y ago
I’m no longer NED from Stage IV colon cancer (first DX 2014), and now it’s returned and inoperable. I was given an option to add Cetuximab which I’d had previously- but the side effects from that were so bad for me that it absolutely isn’t worth it to me to add a few months, but live in misery.

robbiep 2y ago

Whilst this would be great, can I just temper this with a little understanding of how significant some of the side effects of the immunotherapies can be. There are significant limits on how much you can stress an already significantly stressed body and immunotherapy side effects can be WILD