3 ms·

This was far more than just random chance. It's clear as day that quality of medical care makes a difference in outcomes, right? I have sent this discussion to

by dcx 7y ago

This was far more than just random chance. It's clear as day that quality of medical care makes a difference in outcomes, right? I have sent this discussion to the relatives in question so forgive me if I get the exact details wrong. But the median survival time for glioblastoma is fourteen months, and they were quite a while into that. Their original doctors were recommending palliative care (giving up on further medical treatment) with a couple of months expected survival. My relatives live in a small city not known for its quality of medical care. They found the very best neurosurgeon in the country for glioblastoma and transferred him over with some difficulty. They learned that the initial surgeries were not done to a high quality or possibly even slightly botched - and the new surgeon was able to perform additional surgeries that were able to remove a significant amount of the tumour (and did follow-up surgeries later on). Of course this would extend a patient's lifespan! The ketogenic diet now seems to be becoming a standard recommendation for glioblastoma treatment. There are TON of studies now. Here are a few more more. [1] [2] [3] Note the dates on these studies (2017-2018). Back when they looked at this, this was absolutely bleeding-edge stuff. Of course going to the cutting edge of the research, speaking to professors and using your brain to figure out what might help in your case will improve outcomes! Regarding clinical trials, one can read up on / sign up for trials of treatments at different stages of the drug research pipeline. As the modelling spreadsheet in the link above shows, between 1-in-10 and 1-in-2 of these trials will result in FDA-approved treatments that will hit the market between 2 and 10 years from now. If your current expected survival time is in months, it is statistically worth implementing as many of these as possible, because at least one of them will probably work, and you don't have the time to wait for the FDA! You don't really care which one as, like you say, your sample size is N=1. I shared this in the hope that some of the smart people on this forum would read this and know that this is something you may be able to do. We are engineers and scientists. We can read studies and think critically. We can spend a ton of time absorbing specialised information about the N=1 case that matters to us. Death comes for everyone and the above may not make a difference in many cases. But it turns out that sometimes it does! Don't treat medical care like a black box. [1] https://www.practiceupdate.com/content/sno-2018-clinical-trials-of-ketogenic-diet-for-glioblastoma-are-feasible/75971 https://www.practiceupdate.com/content/sno-2018-clinical-tri... [2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5834833/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5834833/ [3] https://www.sciencedirect.com/science/article/pii/S1040842816302323 https://www.sciencedirect.com/science/article/pii/S104084281...

rscho 7y ago
I get that people would try anything to help their loved ones. This in itself is admirable and goes to show the guy was truly loved. We are beyond discussing the scientific value of your approach, so I'll try to communicate what you say conveys for a professional. This is the typical american cancer story. The guy did not want to die, and his family and himself forced him through loads of invasive/experimental procedures because the success of treatment was viewed as a meritocratic achievement, which it is within the bounds of established treatment. I've seen this too many times to count and it saddens me greatly that already sick people get a substantially added dose of suffering on the basis of wishful thinking. If the guy wanted to help OTHERS through his participation in trials, then that's really nice. His family, although very nice people I am sure, should not have had anything to do with his decision. PS: the "best" surgeon wanting to operate on someone most of his colleagues would not touch with a 10-foot pole should have you start running.
- dcx 7y ago
  I understand what you mean by the typical American cancer story. But I do get the sense you have pattern-matched this story for what I shared and may have missed the value of it. We're not talking about quack treatments and unnecessary procedures here. Being intelligent about diving into the medical literature for a specific cancer, and consulting with academics and professionals in the field, in order to correctly identify treatments that may be effective for this case at the cutting-edge years before they enter the mainstream - this seems like an eminently correct thing to do. A simple Google search of "glioblastoma ketogenic diet" should show you the growth of research and good results now emerging in this area. They were ten years ahead of the curve on this. And it's a fact that some medical professionals are better than others and this makes a quantifiable difference. There are bad doctors. And this is reflected in the studies. Doctors fall behind on recent developments, or have different levels of experience with specialised procedures (say, due to being in lower-population rural areas, as in this case), or just plain have worse manual dexterity. [1] [2] The original hospital did a bunch of damage, and I believe they even tried to sweep things under the rug in some way (I don't remember the exact details unfortunately). What I am describing is not something the average person can do. Which is why it is not a mainstream recommendation on how to interface with the medical system. The average person will probably end up suckered into magic cancer beads, quack doctors, and then into the story you describe. This takes intelligence, effort and time. And risk-reward calculations. My relatives are quantifiably in the top one percent on measures of intelligence and education. As mentioned I chose to share this here specifically because many of us here fit the same kind of demographic. [1] https://well.blogs.nytimes.com/2013/10/31/a-vital-measure-your-surgeons-skill/ https://well.blogs.nytimes.com/2013/10/31/a-vital-measure-yo... [2] https://www.theatlantic.com/health/archive/2017/02/when-evidence-says-no-but-doctors-say-yes/517368/ https://www.theatlantic.com/health/archive/2017/02/when-evid...

by dcx 7y ago

rscho 7y ago

I get that people would try anything to help their loved ones. This in itself is admirable and goes to show the guy was truly loved. We are beyond discussing the scientific value of your approach, so I'll try to communicate what you say conveys for a professional. This is the typical american cancer story. The guy did not want to die, and his family and himself forced him through loads of invasive/experimental procedures because the success of treatment was viewed as a meritocratic achievement, which it is within the bounds of established treatment. I've seen this too many times to count and it saddens me greatly that already sick people get a substantially added dose of suffering on the basis of wishful thinking. If the guy wanted to help OTHERS through his participation in trials, then that's really nice. His family, although very nice people I am sure, should not have had anything to do with his decision. PS: the "best" surgeon wanting to operate on someone most of his colleagues would not touch with a 10-foot pole should have you start running.

dcx 7y ago
I understand what you mean by the typical American cancer story. But I do get the sense you have pattern-matched this story for what I shared and may have missed the value of it. We're not talking about quack treatments and unnecessary procedures here. Being intelligent about diving into the medical literature for a specific cancer, and consulting with academics and professionals in the field, in order to correctly identify treatments that may be effective for this case at the cutting-edge years before they enter the mainstream - this seems like an eminently correct thing to do. A simple Google search of "glioblastoma ketogenic diet" should show you the growth of research and good results now emerging in this area. They were ten years ahead of the curve on this. And it's a fact that some medical professionals are better than others and this makes a quantifiable difference. There are bad doctors. And this is reflected in the studies. Doctors fall behind on recent developments, or have different levels of experience with specialised procedures (say, due to being in lower-population rural areas, as in this case), or just plain have worse manual dexterity. [1] [2] The original hospital did a bunch of damage, and I believe they even tried to sweep things under the rug in some way (I don't remember the exact details unfortunately). What I am describing is not something the average person can do. Which is why it is not a mainstream recommendation on how to interface with the medical system. The average person will probably end up suckered into magic cancer beads, quack doctors, and then into the story you describe. This takes intelligence, effort and time. And risk-reward calculations. My relatives are quantifiably in the top one percent on measures of intelligence and education. As mentioned I chose to share this here specifically because many of us here fit the same kind of demographic. [1] https://well.blogs.nytimes.com/2013/10/31/a-vital-measure-your-surgeons-skill/ https://well.blogs.nytimes.com/2013/10/31/a-vital-measure-yo... [2] https://www.theatlantic.com/health/archive/2017/02/when-evidence-says-no-but-doctors-say-yes/517368/ https://www.theatlantic.com/health/archive/2017/02/when-evid...