6 ms·

> I have relatives who managed to convert their dad's brain cancer outcomes from a couple of months in palliative care (which the doctors were recommending) to

> I have relatives who managed to convert their dad's brain cancer outcomes from a couple of months in palliative care (which the doctors were recommending) to five more mostly-good years That's literally NOT how this works and this line of thought is VERY dangerous. You have an N=1 sample size here. Doctors use probability distributions when making prognosis and recommendations for treatment. It's far more plausible that he was just an outlier. By all means take care of your family members but you have NO idea that this behavior changed his outcome. Correlation != causation.

dickless-a-hole 8y ago
Hey shit for brains, did you know that many experimental treatments for cancer are randomized double blinds that result in a total lack of treatment. Doctors frequently sign their patients up to roll the dice and get nothing. By all means shout down anyone you want but you have NO idea which cancer patients are actually being saved by their medication. Treatment != care.
dcx 8y 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 8y 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 8y 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...
pmart123 8y ago
I would echo similar experiences. Healthcare is extremely bureaucratic, and there is an art to navigating it. While I have more than a sample size of one throughout my extended family, I can share my own experience when I had appendicitis right before my sister's wedding in my early 20's. My initial action after I started having symptoms was to go to the ER. I waited five hours in the waiting room, and then decided to go home due to my pain and fever condition being intolerable. I then learned that I could have my primary care doctor call the ER to fast pass me from having to wait in feverish pain. Then, once my diagnosis was official, the resident on call recommended that I elect him to perform the surgery overnight. Since it was during my sister's wedding, my parents were able to come by after the rehearsal dinner, and insist that I wait until the morning for the doctor to perform the surgery. The doctor, who had a national reputation, came in at 6 AM, and with the confidence of Steph Curry lining up for a three point shot, changed the operating procedure due to specific circumstances. As a naive 20 year old, I would have just elected to do what the resident was recommending, and it probably would have been ok. Yet, I think I ended up better off with having family present, pressing back on the recommendation, and waiting for the doctor to arrive.

dickless-a-hole 8y ago

Hey shit for brains, did you know that many experimental treatments for cancer are randomized double blinds that result in a total lack of treatment. Doctors frequently sign their patients up to roll the dice and get nothing. By all means shout down anyone you want but you have NO idea which cancer patients are actually being saved by their medication. Treatment != care.

dcx 8y 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 8y 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 8y 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...

pmart123 8y ago

I would echo similar experiences. Healthcare is extremely bureaucratic, and there is an art to navigating it. While I have more than a sample size of one throughout my extended family, I can share my own experience when I had appendicitis right before my sister's wedding in my early 20's. My initial action after I started having symptoms was to go to the ER. I waited five hours in the waiting room, and then decided to go home due to my pain and fever condition being intolerable. I then learned that I could have my primary care doctor call the ER to fast pass me from having to wait in feverish pain. Then, once my diagnosis was official, the resident on call recommended that I elect him to perform the surgery overnight. Since it was during my sister's wedding, my parents were able to come by after the rehearsal dinner, and insist that I wait until the morning for the doctor to perform the surgery. The doctor, who had a national reputation, came in at 6 AM, and with the confidence of Steph Curry lining up for a three point shot, changed the operating procedure due to specific circumstances. As a naive 20 year old, I would have just elected to do what the resident was recommending, and it probably would have been ok. Yet, I think I ended up better off with having family present, pressing back on the recommendation, and waiting for the doctor to arrive.