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It's standard protocol to take part in cancer trials after cancer stops responding to all approved treatments. Of course this article is different from organize

It's standard protocol to take part in cancer trials after cancer stops responding to all approved treatments. Of course this article is different from organized trials.

anonymouskimmer 3y ago
According to jseliger's blog above it takes real work to get yourself into a cancer trial.
- ethanbond 3y ago
  Trials aren't really designed to be care-giving mechanisms. It's not a goal to be easy to get into. They just need to fill the trials with eligible patients and that's it, obviously very unfortunately for a lot of folks.
  - anonymouskimmer 3y ago
    > Trials aren't really designed to be care-giving mechanisms. Sure, but they could be. Easy enough to gain profit from those who get the disease at a later date. If a current standard of care treatment is used as a control for say, half of the cohort, there could be some way to charge every participant's insurance for half the cost of the standard of care (with the other half getting the experimental treatment on a blinded basis).
    - ethanbond 3y ago
      1) A trial patient costs far, far, far more than the cost of caring for a patient 2) Trials are already obscenely (and increasingly) difficult to design and execute even for pure scientific ends. It’s really not trivial to add other objectives like this, even if money were totally irrelevant.
      - anonymouskimmer 3y ago
        1) Any extra funds can only help. 2) And thus the humanitarian part of the trial can serve dual purpose as a training exercise for the additional physicians working with the humanitarian cohort.
        ethanbond 3y ago
        Extra funds for extra complexity? No pharma company will take that trade. Trials aren’t humanitarian efforts.
        anonymouskimmer 3y ago
        What kind of extra complexity other than just manufacturing more treatments? A lot of any extra complexity should be handled by the additional patient's medical providers anyway. Depending on the rarity of the illness, this may be something that the government can easily force pharma companies to accept. They accept far more in regulatory burden and still do business.
        ethanbond 3y ago
        Do you think standard of care already includes collecting the vast amount of data required to understand a treatment's effects? Medical providers aren't trained to execute clinical trials. They can do bits and pieces, but they still need extremely strong, close oversight from an actual researcher. Someone ultimately has to hold liability for trial participants too, and no one is going to take on the liability of an untrained care provider to administer a trial to a patient. Additionally, the pharma company wouldn't allow this because in addition to the upfront design complexity, it would put the trial itself at risk. You're not really allowed to say, "just try it in a bunch of people, it's okay if untrained folks mess it up because if they do we can just throw out the data."
        anonymouskimmer 3y ago
        I addressed this in a comment here: https://news.ycombinator.com/item?id=39247715 https://news.ycombinator.com/item?id=39247715
  - deleted 3y ago
    [deleted]
buffington 3y ago
One problem with GBM is how fast it progresses. I was my dad's caretaker when he had it, and the amount of waiting and paperwork required for most of the programs we looked at were beyond what his life expectancy was. Those that might have been possible were shut down - it was during the peak of covid. The exhaustion from the daily visits to the cancer center for radiation treatment required full head to toe PPE for both of us. Cancer itself is exhausting, but the paperwork and phone calls and pharmacies - it's too much. I'm grateful for the work of the doctors in the article, and very hopeful that the treatment works. A close friend of mine was on a trial vaccine for his cancer, which looked promising for a while, but suddenly stopped working - the cancer was ultimately fatal. I think trials should be offered as potential first steps, especially for aggressive cancers. Patients know the risks. They're either 100% going to die within 6 months to cancer, or, worst case, die trying to fight it, or best case, be cured.
- anonymouskimmer 3y ago
  > I think trials should be offered as potential first steps We need really good science and statistics, far superior to p-values, to allow this potentially life saving treatment without the inevitable deaths from people at the limits returning a "not significant" finding for something that actually works. Maybe something like allowing people who are too far gone to qualify for treatment as part of a study to instead qualify for the experimental treatment with their results only being included as a special "humanitarian" cohort. I'd also like studies to be able to compare a treatment group against prior control groups, so that everyone today can get the experimental treatment instead of some of them being given a placebo (if there's a lack of another decent treatment to use as a control). If there's nothing effective that can be done as a control, every one should get the treatment.
  - buffington 3y ago
    The rational side of me totally agrees with everything you've said. But the part of me that witnessed glioblastoma - I think when someone is facing that, it should be a VIP pass straight to the "whatever has even a remote chance of actually working" lobby. Which is basically what the article describes, so I'm optimistic for the doctor and his team. Of course, not everyone is as risk tolerant as I am. My dad wanted to believe he'd be one of the rare "survivors" (I don't think it happens) using traditional radiation and chemo, and was still weighing pros and cons of other potential treatments. But I have the benefit of hindsight, and a lot more education now, and I think it's unethical to not immediately consider trial programs. The most common way to treat glioblastoma today (targeted radiation and chemo) one that only promises to give you more months of life, not years, is also the only treatment option covered by Medicare, the health insurance provider for most retirees in the United States. The uber-aggressive glioblastoma that my dad developed is what most people over retirement age get when they develop glioblastoma as well. Average lifespan from diagnosis to death: 6 months. That's if you surgically remove the tumors, a procedure not without its own risks. Risks that are usually worth it, since without surgically removing the tumors, lifespan drops to weeks. What I'm saying is there's no path to trial programs for most of the people who'd benefit from those trials the most. It's not even on the map for them.
jrpt 3y ago
It isn’t standard to take part in clinical trials. Only about 5% of adults with cancer partake in a trial.

It's standard protocol to take part in cancer trials after cancer stops responding to all approved treatments. Of course this article is different from organized trials.

anonymouskimmer 3y ago

According to jseliger's blog above it takes real work to get yourself into a cancer trial.

ethanbond 3y ago
Trials aren't really designed to be care-giving mechanisms. It's not a goal to be easy to get into. They just need to fill the trials with eligible patients and that's it, obviously very unfortunately for a lot of folks.
- anonymouskimmer 3y ago
  > Trials aren't really designed to be care-giving mechanisms. Sure, but they could be. Easy enough to gain profit from those who get the disease at a later date. If a current standard of care treatment is used as a control for say, half of the cohort, there could be some way to charge every participant's insurance for half the cost of the standard of care (with the other half getting the experimental treatment on a blinded basis).
  - ethanbond 3y ago
    1) A trial patient costs far, far, far more than the cost of caring for a patient 2) Trials are already obscenely (and increasingly) difficult to design and execute even for pure scientific ends. It’s really not trivial to add other objectives like this, even if money were totally irrelevant.
    - anonymouskimmer 3y ago
      1) Any extra funds can only help. 2) And thus the humanitarian part of the trial can serve dual purpose as a training exercise for the additional physicians working with the humanitarian cohort.
      - ethanbond 3y ago
        Extra funds for extra complexity? No pharma company will take that trade. Trials aren’t humanitarian efforts.
        anonymouskimmer 3y ago
        What kind of extra complexity other than just manufacturing more treatments? A lot of any extra complexity should be handled by the additional patient's medical providers anyway. Depending on the rarity of the illness, this may be something that the government can easily force pharma companies to accept. They accept far more in regulatory burden and still do business.
        ethanbond 3y ago
        Do you think standard of care already includes collecting the vast amount of data required to understand a treatment's effects? Medical providers aren't trained to execute clinical trials. They can do bits and pieces, but they still need extremely strong, close oversight from an actual researcher. Someone ultimately has to hold liability for trial participants too, and no one is going to take on the liability of an untrained care provider to administer a trial to a patient. Additionally, the pharma company wouldn't allow this because in addition to the upfront design complexity, it would put the trial itself at risk. You're not really allowed to say, "just try it in a bunch of people, it's okay if untrained folks mess it up because if they do we can just throw out the data."
        anonymouskimmer 3y ago
        I addressed this in a comment here: https://news.ycombinator.com/item?id=39247715 https://news.ycombinator.com/item?id=39247715
- deleted 3y ago
  [deleted]

buffington 3y ago

One problem with GBM is how fast it progresses. I was my dad's caretaker when he had it, and the amount of waiting and paperwork required for most of the programs we looked at were beyond what his life expectancy was. Those that might have been possible were shut down - it was during the peak of covid. The exhaustion from the daily visits to the cancer center for radiation treatment required full head to toe PPE for both of us. Cancer itself is exhausting, but the paperwork and phone calls and pharmacies - it's too much. I'm grateful for the work of the doctors in the article, and very hopeful that the treatment works. A close friend of mine was on a trial vaccine for his cancer, which looked promising for a while, but suddenly stopped working - the cancer was ultimately fatal. I think trials should be offered as potential first steps, especially for aggressive cancers. Patients know the risks. They're either 100% going to die within 6 months to cancer, or, worst case, die trying to fight it, or best case, be cured.

anonymouskimmer 3y ago
> I think trials should be offered as potential first steps We need really good science and statistics, far superior to p-values, to allow this potentially life saving treatment without the inevitable deaths from people at the limits returning a "not significant" finding for something that actually works. Maybe something like allowing people who are too far gone to qualify for treatment as part of a study to instead qualify for the experimental treatment with their results only being included as a special "humanitarian" cohort. I'd also like studies to be able to compare a treatment group against prior control groups, so that everyone today can get the experimental treatment instead of some of them being given a placebo (if there's a lack of another decent treatment to use as a control). If there's nothing effective that can be done as a control, every one should get the treatment.
- buffington 3y ago
  The rational side of me totally agrees with everything you've said. But the part of me that witnessed glioblastoma - I think when someone is facing that, it should be a VIP pass straight to the "whatever has even a remote chance of actually working" lobby. Which is basically what the article describes, so I'm optimistic for the doctor and his team. Of course, not everyone is as risk tolerant as I am. My dad wanted to believe he'd be one of the rare "survivors" (I don't think it happens) using traditional radiation and chemo, and was still weighing pros and cons of other potential treatments. But I have the benefit of hindsight, and a lot more education now, and I think it's unethical to not immediately consider trial programs. The most common way to treat glioblastoma today (targeted radiation and chemo) one that only promises to give you more months of life, not years, is also the only treatment option covered by Medicare, the health insurance provider for most retirees in the United States. The uber-aggressive glioblastoma that my dad developed is what most people over retirement age get when they develop glioblastoma as well. Average lifespan from diagnosis to death: 6 months. That's if you surgically remove the tumors, a procedure not without its own risks. Risks that are usually worth it, since without surgically removing the tumors, lifespan drops to weeks. What I'm saying is there's no path to trial programs for most of the people who'd benefit from those trials the most. It's not even on the map for them.

jrpt 3y ago

It isn’t standard to take part in clinical trials. Only about 5% of adults with cancer partake in a trial.