*UPDATE Dave deBronkart: How We Can Help Each Other

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Comments

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #22
    just another great resource for us
    thanks phil, great video.

    dave great message thanks.

    signed up to colon on list serv. will mention anything really interesting that pops up.

    we already do all his stuff on csn,

    as i have often said its the level of disagreement in our forum

    that i find our strongest asset and our biggest challenge.

    but i would not change it for quids, who wants a group of sympathetic yes mean and woman.

    clearly recognising the the value of this community, the value of the time and effort we invest here is also worth highlighting.

    hugs,

    pete
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #23
    SisterSledge said:

    Welcome Dave!
    I'm excited to see that e-PatientDave found our little playground :)

    As I've said here many times, I come to CSN mostly to gain information/knowledge that will help in my own cancer battle...I think my fellow cancer patients are very likely to have knowledge, information and experiences to share that would be helpful to me that I can't get from my docs. Day after day this has proven to be so...and this is Dave's main premise...patients are capable of finding helpful treatment options that their docs may not have considered or have may have considered and chosen not to include for bad reasons.

    Personally, I have had two opinions about my cancer and they were completely opposed to each other...even the professionals can't agree or even come close to the same answers! When I ask my doc about aspects of my treatment or potential treatments, he often answers with "That's a good question!" and then goes on to explain why he doesn't have the answer. Docs don't have all the answers, all the knowledge, all the time to investigate that we would want for ourselves...and I'm not going to wait around hoping they will, as nobody has it all.

    The internet is full of mis-information but it is not all so...search diligently, talk to other patients, ask lots of questions...seek out your answers and don't expect your doc to know everything.

    *added*
    Dave's additional links:
    GOLFIG IMMUNOTHERAPY EFFECTIVE IN COLORECTAL CANCER?
    These chapter summaries have been prepared by e-Patient Dave

    Absolutely
    We need to be our own advocates and speak up as well--we never know what info we have may just be the little piece someone needs to figure it out.....like gluten intolerance and the intestinal cancer connection was for me. Changed my whole life.

    I feel very fortunate that my oncologist is an open-minded doctor willing to work with me.

    peace, emily
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #24
    son of hal said:

    "Let patients help"
    Great piece Phil, thanks for posting this. Unfortunatley this doesn't follow the general trend on here which seems to be "listen to your doctor, they know best". I know there are many free thinkers on here but the cancer "patients" are still outnumbered by the cancer "victims".

    HAL/IBM
    Let's think outside of the wooden box since we're still not in one. :-)

    While the general trend on here is mainstream, there is nothing that says it has to be. We are people who have/had cancer touch us or loved ones. With more and more people joining the discussion with different stories to tell, the more informed we all become. Seven years ago I made my decision based on what I knew about my situation and also what my oncologist suggested. I know, I know, she's mainstream. She's also very good in what she does and is aggressive which is what I wanted.

    I certainly do not consider myself a victim at all. Either of cancer or of the mainstream medical profession. I do know that many people have sub-standard treatment and doctors. I'm luckier that I thought I was after reading many people's stories on here. There's no guarantee of anything as far as cancer goes. Really, as far as life goes there are no guarantees except what Ben Franklin said...(although not everyone pays their taxes)

    Years ago no one would question their doctors at all. Now, people do ask why this and why that. We realize they are not infallible. I was surprised (pleasantly) to hear Emily's story about how when her doctor was dx, she gave HIM advice and he followed it and it seemed to be the right route to take. Would Dr Kildare or Marcus Welby have done that?

    We live in the information age, let's share and help and be part of the solution instead of being victims of cancer. Either mainstream medicine or alternative medicine.
    -phil
    Glad you enjoyed the piece. TED talks are great
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #25
    bravo, Dave
    E-patient Dave has important points - at least for those willing and able to participate in the information age.

    I especially liked Dave's emphasis on getting copies of your own data. We've gone one step further, and order our own, more extensive lab data directly, more often, for less money, without any insurance arguments. Maintaining our own data has helped optimize treatments, optimize nutrition, get earlier diagnosis, obtain medical agreement-permissions, and to overcome catastrophic medical errors or miscommunications. Some redundancy is good, our emphasis is on adding relevant data at lower cost.

    Also the presumption of an unwashed laity with uncorrectable ignorance is a little grating when I repeatedly see doctors' ignorance of their own literature outside the most common, or highly compensated, treatments. Hopefully, doctors and medical systems that don't account their patients' participation will go the way of the horse and buggy.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #26
    Wednesday, 7/27 1 pm @ TED.com
    Tomorrow at 1 pm ET, TED.com will host a special live one-hour TED Conversation based on the "Let Patients Help" video. Topic: "WHY are patients the most under-used resource in healthcare?? How did that happen??"
    Click for
    Instructions and details:
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #27
    PhillieG said:

    Wednesday, 7/27 1 pm @ TED.com
    Tomorrow at 1 pm ET, TED.com will host a special live one-hour TED Conversation based on the "Let Patients Help" video. Topic: "WHY are patients the most under-used resource in healthcare?? How did that happen??"
    Click for
    Instructions and details:

    Awesome
    I'm going to read up on this and try to get in on it. I've applied to attend the TED conference here in Honolulu in November.

    Thanks Phil!!

    Aloha,
    kathleen
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #28
    Kathleen808 said:

    Awesome
    I'm going to read up on this and try to get in on it. I've applied to attend the TED conference here in Honolulu in November.

    Thanks Phil!!

    Aloha,
    kathleen

    Wow
    That's great that you are going to try to attend one of the conferences. I'm sure they have one in NYC. I watch the TED talks on my ROKU so I can see them on TV. They don't stream them live though so I'll most likely use the internet for this one. They are all very interesting, too bad stuff like this wasn't on regular TV instead of so-called "reality shows".
    Like Ernie Kovacs once said "TV is a medium, it not rare and it's seldom well-done".
    -p
  • abrub
    abrub Member Posts: 2,174 Member
    #29
    Buckwirth said:

    If you read up on Dave
    it does seem that he is an advocate of the relevant science.

    No woo in his speech, just a call for patients to have access to their data so they can share it with the relevant professionals, and in a relevant manner.

    Oh, and the treatment he found on-line was all about the relevant science, no woo involved.

    On the rest of it, I tend to agree with you. The 24 week (it was weeks, not months) thing is an average on a curve. He could just as easily been on the long part of that curve. And if I was an Oncologist I would advise most of my patients to ignore the web as an information source, most certainly for self diagnoses.

    That said, there are more than a few who are capable of filtering through the BS and finding good, useful information, and making your data available in a format that is readable by any doctor you might consult would probably save lives and lead to earlier dx of things like CRC.

    Median is not average
    Just a note of definition of terms: the Median life expectancy is not the Average life expectancy.

    "Median" means that 50% of patients live 24 weeks or less, but 50% live more than 24 weeks. Median is a point on a chart referring to the number of entries, not related to the values of the data.

    A Mean or Average life expectancy of 24 weeks means that most patients live 24 weeks.
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #30
    abrub said:

    Median is not average
    Just a note of definition of terms: the Median life expectancy is not the Average life expectancy.

    "Median" means that 50% of patients live 24 weeks or less, but 50% live more than 24 weeks. Median is a point on a chart referring to the number of entries, not related to the values of the data.

    A Mean or Average life expectancy of 24 weeks means that most patients live 24 weeks.

    Median vs Mean
    (from diffen.com)

    Mean (or average) and median are statistical terms that have a somewhat similar role in terms of understanding the central tendency of a set of statistical scores. While an average has traditionally been a popular measure of a mid-point in a sample, it has the disadvantage of being affected by any single value being too high or too low compared to the rest of the sample. This is why a median is sometimes taken as a better measure of a mid point.

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