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*UPDATE Dave deBronkart: How We Can Help Each Other

PhillieG's picture
PhillieG
Posts: 4887
Joined: May 2005

Let's try another title. The response has been underwhelming with the exception of a few. I know this is basically what we do on here but it's nice to see it in action elsewhere.
Dave deBronkart: Meet e-Patient Dave.
I was checking out some TED Talks on my ROKU (Streaming TV device) and saw this fantastic one called Dave deBronkart: Meet e-Patient Dave. It reminded me a lot of this site and how we try to help each other out. It also brings up some very good points about health care and questions why patients seem to be left out of the discussion on how to make things better.
Please watch this short (15min) video.
Thanks
-phil

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Thanks Phil. I'll check it out. I think TED talks are great.

Aloha,
Kathleen

PhillieG's picture
PhillieG
Posts: 4887
Joined: May 2005

It talks about how patients help each other by posting information.
The TED talks are great, I agree.
-p

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

later for sure! it's a 16 minutes video!.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Will do in a few days. I'm WAY behind on being ready by 5 pm to leave town for 3 days. Oops! Don't tell Bill-he thinks I've been packing all day! (I will definitely put it on my "to do" list when I get back!)

*hugs*
Gail

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

also has a book that looks like an interesting read:

Laugh, Sing, Eat Like a Pig

From the looks of it the e-patient movement is a lot more complex than anything this site gets into, but definitely something I am going to research further.

Thanks Phil!

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

Thanks for sharing this Phil, tis a good video...as is every TEDtalk I've ever seen :)
Janine

PhillieG's picture
PhillieG
Posts: 4887
Joined: May 2005

Glad you enjoyed it. TED talks are fantastic
I re-titled the post since it wasn't getting much "action".
I'm about ready to call it "Free Food & Drink"
-p

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

The treatment he found on the web was Interleukin-2. It does not have a great success rate, and therefore is not offered in a lot of hospitals, but when it does work, it works very well.

In searching for more information, I came across a treatment that I think was originally shared by ColoCan (Steve), called GOLFIG, which probably include Interleukin-2 or something much like it.

Here is an excerpt from the linked article:

‘We were very surprised at the first planned analysis, that progression-free survival with GOLFIG was much greater compared with the control group', he said. ‘So our scientific board asked to us to close the trial and also to start evaluating the survival.'

Progression-free survival was 16 months for GOLFIG versus 7.43 months with FOLFOX, and median survival was 30 months, Dr Correale said, noting that there is a plateau in patients who never relapse after five to six years.

Regarding cost, he said that GOLFIG is approximately one-sixth the cost of current treatment with bevacizumab and FOLFOX – $5,000 per patient per year versus $30,000.

epatientdave
Posts: 4
Joined: Jul 2011

Hi Buckwirth - I'm new here so I know I don't know what y'all know :), so I'll humbly toss in 2c that may be well known. (Apologies for long winded post.)

What I learned about IL-2 from my patient peers on ACOR.org was VASTLY more up to date than anything available on any website, or even (to my amazement) in the NCCN database. In official sources, I read that IL-2 was effective in 7% or 13% of cases; when my treatment started at Beth Israel Deaconess in 2007, their success rate was 20%, and when my clinical trial was reported recently, it had reached 30%, for well chosen patients.

Nastily, the NCCN and almost all online sources cite a 4% fatality rate from side effects. That dates back to the original Phase II trial in the mid-1990s, which led to IL-2 being approved by the FDA. In comparison, my hospital has lost one patient out of the last 1200: they're experienced and good at managing the side effects.

So, imagine a community oncologist who sees a case like this once a year. They look it up and see 7% or 13% success, and a 5% chance of death. BUT THAT INFORMATION IS WRONG.

The problem, my oncologist tells me, is that nobody involved in managing NCCN is motivated or incentivized to keep it current for the benefit of patients.

The thing is that this is the ONLY treatment that ever produces a shot at a cure. I'd be pretty p*ssed off of my docs didn't tell me about a chance at a cure simply because they don't offer it! Worse (IMO), there are now treatments like Sutent that can be taken outpatient, but they're not curative: they simply offer to keep you alive (and paying) forever, with side effects that are often substantial. In contrast, my treatment started in April 2007 and ended July 23 that year. I've had not a drop of anything, nor any side effects, since then. All indications are that I'm completely healthy four years ago.

I assert that it's darn near immoral not to tell patients that there's something that offers a shot at this outcome. But from what I've heard, 3 out of 4 kidney cancer patients never even hear the stuff exists.

I was also disgusted to see that the info about the treatment on MedHelp.org is just flat-out wrong, despite having been approved by a board certified nephrologist. It says IL-2 is an anti-angiogenesis drug; it's not.

The thing is, I'm not interested in tearing anything down - I just want patients to have access to the best possible information. Clearly, "trusted sources" in this case are a fail.

So I advocate for professionals to LISTEN to patients and consider what we say, including the possibility that we might know something accurate that they don't.

Heaven knows we have more at stake than anyone else, and heaven knows the docs are overloaded and flooded with information already. As I say in the video, for heaven's sake, Let Patients Help.

p.s. Re GOLFIG - this page http://cancerology.blogspot.com/2011/04/golfig-immunotherapy-effective-in.html says it's "granulocyte-macrophage colony stimulating factor and low-dose aldesleukine." Aldesleukin is indeed interleukin-2, but GOLFIG uses it low-dose, and I had a high-dosage protocol (HDIL-2), which is vastly different.

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

Patients seem to be left out of the discussion because they have no relevant information. They may think they do, but it's typically some wild extrapolation from an anecdote, as (so far as I can tell) in the case of Dave. He was told his type of cancer had a median survival rate of 24 months. Did that mean he was only going to survive 24 months? Not really. It meant only what it said. Is it some sort of miracle that he's still alive, or does it prove something about "patient power"? Not at all. He was lucky. Surviving a cancer with a 24 month median survival rate is not truly wonderful -- some will survive. If he hadn't been lucky, he wouldn't be going around giving inspirational lectures and promoting his book. What does it prove? I don't want my doctors to be getting inspiration from web flakes, I want them to know the relevant science.

--Greg

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

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.

abrub's picture
abrub
Posts: 2095
Joined: Mar 2010

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's picture
Buckwirth
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Joined: Jun 2010

(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.

***********************

PhillieG's picture
PhillieG
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Joined: May 2005

At different jobs I've had, seldom if ever did anyone who was designing software or designing a machine ever talk to the people who actually use what they create. I mean, what do WE know, we only use it for 8 or more hours a day. We obviously know nothing about it on paper only in real-world practice.

Dave got information about possible treatments and the names and numbers of doctors who could possibly help him. I do not think that the message of the TED presentation was to find "web flakes" and use people as guinea pigs. Where does that put the people on here who share their experiences with the rest of us? Are we "web flakes" too?
That is not what I got out of it but we often hear what we want to hear.
I mean, depression isn't a valid condition that cancer patients should get, right?

Great input, very inciteful Greg...
-phil

epatientdave
Posts: 4
Joined: Jul 2011

Hi Greg. I understand your points, but please learn more about what I've said and written before concluding that I'm a flake who doesn't know how to think critically.

Re medians, I said I read that my median survival was 24 weeks (not months as you said - if you want to attack, at least get YOUR facts straight). I've spoken extensively about how my ACOR patient community quickly reminded me of what I already knew from college: the median isn't the message (Stephen Jay Gould's paper, which I presume you know). I quickly decided that I chose to try to be an outlier, while fully understanding how bad the odds seemed to be.

You say patients have no relevant information. Please see my long note a few minutes ago, and read the e-patient white paper's chapter summaries http://www.acor.org/epatientswiki/index.php/Summaries, especially chapter 2, for many examples. Also, much has been written about the cases of the other patients I cite in the talk, Regina Holliday and @RAWarrior.

The point of the speech is not that I had an unusual outcome; as I'm sure you know, it doesn't say anything of the sort. I DID have an unusual outcome, but that's ... unusual! The point, rather, is that patients can help and IMO should be allowed to.

To return to your assertion that I'm a web flake, and you want your docs to know the relevant science: I ask you to consider whether doctors can be expected to know all the relevant science. Again see my long post a few minutes ago, and please read the excellent "How Doctors Think," by Jerome Groopman MD, which documents his many years of experience with the difficulties of diagnosis, including a review of the evidence that doctors are OFTEN wrong.

The closing line of my talk was carefully chosen. It's not "Patients Know Best! Patients Know Best!" It's let patients help.

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

"To return to your assertion that I'm a web flake, and you want your docs to know the relevant science: I ask you to consider whether doctors can be expected to know all the relevant science."

I'm sure we can't count on doctors to know all the relevant science, but the problem I see with expecting professionals to be advised by amateurs, is that amateurs don't have the background to judge whether a reported experimental result is worth paying attention to. Just because a report makes its way into a journal, that doesn't mean a lot. Was the study based on questionnaire data, epidemiological data, clinical data? What is the reputation of the journal, the reviewers, the researchers? If you're a pro, you probably have some information about these things.

Taking a journalistic approach to science is problematic. A journalist may decide he has enough evidence when he finds three corroborating sources. A scientist proceeds in a very different way. You don't vote on the truth.

--Greg

epatientdave
Posts: 4
Joined: Jul 2011

This popped up in my Google Alerts. Thanks for the mention.

Somehow I wasn't aware of this network - looks like you do great stuff here! My own website is www.epatientdave.com and I blog at www.e-patients.net.

I'm pretty much spending my (frenzied) life now on spreading the word about the validity of patient networks, and from what I've seen in skimming here just now, this looks like a great example. Thanks for all you do, y'all.

PhillieG's picture
PhillieG
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Joined: May 2005

Nice to meet you. I'm glad that you discovered this site, it's generally very helpful, supportive, and informative. We have many members who have tried various protocols. Some are mainstream like myself with very good success, others who work with nutritionists, TCM practitioners, juicers, and combinations of Western and Eastern medicine with equally good success.

I felt that your point about the patients too often being left out of the conversation was SO worth mentioning here that I had to share what I heard. It's like "what do we know, we're only the patients".
I think we sometimes know a hell of a lot!
On a smaller scale, we seem to be doing similar work to what you advocate.
I know you're busy but please don't be a stranger.
Regards,
-phil
PS: Why do I suddenly feel like I'm in the scene at the movie theater in Annie Hall?

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Dave,

I'm one of those Phil is talking about doing alternative protocols. My Mayo Clinic oncologist kept encouraging me to take the advised chemo for my Stage III colon cancer. I declined at each visit.

Then one visit his noticeable weight loss made us question what was up with him and he said he had been dx'ed with colon cancer himself. I immediately grabbed his paper pad and pencil and scribbled down 4 book titles of alternative medicine that had been highly informative to my own cancer-free non-chemo life. His wife bought them and he read them. He started juicing and he never advised me to take the chemo again.

While this is a different scenario than what you're describing, he actually DID listen to his patient and made his own choices; and he has access to all the latest "science" that comes down the pike. He also sees too many outcomes......

Just wanted to encourage you to share more here.....this board could use a bloke like you around! Just sayin'.

peace, emily

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Phil,
Thanks again for this link. Dave thanks for joining in the conversation. It is great to have you.

Dave, what you bring to the table is so very important. We have seen it both with my husband's cancer fight as well as with our daughter's autism. The autism community has pushed the scientists and doctors to look further. They have resisted like mad but are finally acknowledging and backing up with studies that the environment is playing a key role on the increase of autism. We must keep pushing and learning from each other. We are the ones with a dog in the fight. (I don't mean my husband and daughter are dogs, just like the saying.)

Keep spreading the word and sharing.

With Gratitude and Aloha,
Kathleen

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

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

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

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

son of hal
Posts: 117
Joined: Mar 2011

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".

PhillieG's picture
PhillieG
Posts: 4887
Joined: May 2005

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

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

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

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

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's picture
PhillieG
Posts: 4887
Joined: May 2005

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's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

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's picture
PhillieG
Posts: 4887
Joined: May 2005

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

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