Slashdot Mirror
Finding a Crowdsourced Cure For Brain Cancer
Hugh Pickens writes "Salvatore Iaconesi, a software engineer at La Sapienza University of Rome, writes that when he was recently diagnosed with brain cancer, his first idea was to seek other opinions. He immediately asked for his clinical records in digital format, converted the data into spreadsheets, databases, and metadata files, and published them on the web site called The Cure. 'The responses have been incredible. More than 200,000 people have visited the site and many have provided videos, poems, medical opinions, suggestions of alternative cures or lifestyles, personal stories of success or, sadly, failures — and simply the statement, "I am here." Among them were more than 90 doctors and researchers who offered information and support.' The geneticist and TED fellow Jimmy Lin has offered to sequence the genome of Iaconesi's tumor after surgery, and within one day Iaconesi heard from two different doctors who recommended similar kinds of 'awake surgery,' where the brain is monitored in real time as different parts are touched. A brain map is produced and used during a second surgery. 'We are creating a cure by uniting the contributions of surgeons, homeopaths, oncologists, Chinese doctors, nutritionists and spiritual healers. The active participation of everyone involved — both experts and ex-patients — is naturally filtering out any damaging suggestion which might be proposed,' writes Iaconesi. 'Send us videos, poems, images, audio or text that you see as relevant to a scenario in which art and creativity can help form a complete and ongoing cure. Or tell us, "I am here!" — alive and connected, ready to support a fellow human being.'"
There were a ton of people interested in his case, but imo that was strongly dependent on the novelty and the fact that it's uncommon so far. Why did these geneticists and researchers spend a bunch of unpaid time on his case in particular? Because it was one of the few (only?) available in this form. But every year there are about 13 million people diagnosed with cancer. What if even 1% of them were uploaded online? Would there be folks like Jimmy Lin looking through all 130,000 of those cases on a volunteer basis? My guess would be no: once it gets to be a few hundred or thousand people trying the same thing, and then it just goes back to being normal medicine again, of the kind where you need doctors who're doing it as a full-time job to go through all the cases.
10 PRINT CHR$(205.5+RND(1)); : GOTO 10
"Send us videos, poems, images, audio or text that you see as relevant to a scenario in which art and creativity can help form a complete and ongoing cure."
Cancer does not work that way.
Now we've got homeopaths and spiritualists involved, a cure for cancer must surely be just around the corner!!
Which xxxplasm.xxxxlipoma are we targeting?
This is incredibly misguided, and that is the most charitable way of putting it. Other things you could call it are bloody stupid, daft and irresponsible. There is no way in hell you're going to be able to separate the wheat from the chaff with such a volume of random input, most of it crap, and come up with any useful ideas, let a lone a "cure". Especially not if you're apparently going to accept most of the crap. Homeopaths? Chinese doctors? Spiritual healers? "Uniting their contributions" is going to drag the net worth of the resulting mess down to below zero...
It's nice that he's getting lots of support and poems and such.
The really interesting thing is that this displays that doctors need to have an information sharing system that is more real time and more collaborative. It's not surprising, you can read news stories and such any week and find stories where a doctor misdiagnosed or used an outdated treatment to bad ends. You'd think that one of the AMA's and like organizations purposes would be to keep doctors up to date, but we'll have to defer to a doctor on how well that purpose is fulfilled, and whether the "problem" doctors are just negligent in keeping up.
I also don't believe every patient can benefit from this approach, as then doctors would be spending all their time reading the internet instead of helping patients. Obviously that won't do. What they really need is a searchable database that will actually work for the problem domain, and perhaps could be searchable by patients too. Never hurts to have access to more information, as long as it's presented in a normalized format.
The cesspool just got a check and balance.
Simply misunterstood, I would agree. It will take us another gazillion years to cure that f*cker. Sadly...
www.weka-sauna-holzprofi24.de
It's in part novelty, it's in part the cult of the individual. We've seen the internet pay for doctors bills, legal fees, new houses, breast implants etc for individuals, to the detriment of bigger charities that are far more efficient (and often more deserving) because people like an individual person with an individual story -- it's more personal. A genuine "cause" is far more abstract.
Got them moderator blues I blieve I walk out the do', With these mod-points I been gettin', I 'most never post no mo'
We have so much computing power now, can we control 1000 microwave beams from 1000 angles with their wave peaks tuned so they coincide to burn the tiniest point in a person without affecting the outside of the body (because the microwaves are too low).
So you need to detect what is a tumor cell, and given the improvement in computing we can zap it quite easily now. Even in a body that's not stationary. We can simply compensate for any movement.
So it comes down to how to flag a cancerous cell.
But then I also read Slashdot on the idea of preventing the tumor from encouraging blood vessel growth and thus starving it of oxygen. The tumor releases something that causes the body to make lots of blood vessels, needed to feed the cancer cells.
So can we not detect instead, the increase in blood vessels which must be near the tumour and zap those instead? We map the person's blood vessels, over time and where they grow too fast, we zap them. That must be associated with the cancer, so by zapping the unusual blood vessels we stop the cancer from getting the oxygen it needs?
With more eyes on a problem one can find a solution, in this case a cure, far faster than one would ordinarily. And also the people involved actually want to cure the disease as opposed to the standard situation which is where you have a handful of bored oncologists "study" a particular cancer for years in their isolated area of expertise who don't really want to lose job security by curing anything.
I'm a chronic pain sufferer (Right rib area) with no known reason for it. I've had MRIs, cameras up my ass, down my throat, bits cut out and everything else you can imagine. I'm at the point where I feel doctors are frustrated as much as I am and instead of trying to look for more stuff they are telling me to just deal with it and try to live a normal life (like you can live a normal life when it feels like you have a flaming poker in your chest).
I have been considering making some videos explaining my condition and posting them on You tube to see what people have to say about it. I'm sure many will just insult me or find it an entertaining freak show, but when the system fails you, why not try asking for other people's suggestions? Maybe I have some ultra rare condition that most doctors can't pick up or have never even heard of. I'm aware my chances are slim to none, but what harm does it do to try and crowd source some information? Even if 99.9% of it is crap and 1% says "eat cheerios more often, it will make you feel happier", I haven't lost anything other than a couple of hours of video editing and some pride.
I had no direct access to my own information, since I use Linux and OSX rather than the files' Windows-based viewer. As a software engineer, I found software and programming tools to hack the files and make them open
Is this a joke?
It also sounds like Sturgeon's law is having a field day among some of the contributors...
Reading the summary, I thought: "Open the gate and let loose the quackery!"
Inviting EVERY random idea seems more like desperation than progress. For this to ever be effective, they'll need to filter out the previously debunked nonsense.
The guy who actually has it is going to be so rich that he's living on his own private moonbase with a harem of Scarlett Jonannson clones.
You are not going to get better by taking free advice from smelly hippies and Doctor Trollface.
If you were blocking sigs, you wouldn't have to read this.
The problem with crowdsourcing stuff like this is that the majority of "the crowd" consists of dumbfucks.
Now of course it consists of dumbfucks for every other kind of crowdsourcing as well, but in most cases in doesn't matter.
Hallmark better patent this or it's going the way of the buggy whip.
Set your phasers on "funky"!
Getting a second opinion is far from novel. People do it all the time. The novelty is the scale in which he takes that second opinion thing.
Will it help him?
No, it won't. In fact it will get in the way.
The problem is that he will get a lot of opinions with a lot of different treatments which will be mutually exclusive. Also he will get a lot of BS suggestions ranging from homeopathy, feng shui to praying. Quod capita tot census.
The only surefire cure -in fact the only medical discipline that REALLY is able to cure by itsself- is surgery. If it isn't applicable then you will be limited to the unpleasant other alternatives. Or praying. Or homeopathy. Or feng shui.
I really do sympathise with him. He is understandably grasping for straws and hopes there is somebody out there who can help him and he hopes his fishing expedition will actually find that person. But even if there were a silver bullet it is very unlikely he will be able to identify it.
20 minutes into the future
My ex was in chronic joint pain for years. She was told by leading medical experts that it was arthritis (before she was 30) and prescribed all kinds of arthritis medication and treatment over decades for it before giving up because nothing really worked.
When I started living with her, I spotted lots of problems she had with movement and joints and I had to explain to her that, no, it's not normal to hurt all the time, or to dislocate your shoulder by opening a jar of sweets. We googled around, and put a lot of footwork into avoiding quackery, and ended up discovering about hypermobility syndrome (now call JHS, where J = joint) purely by chance. The doctor had never heard of it and was interested in it up to a point.
Basically, her DNA codes a few dodgy things that make her cartilage weak. Most people have JHS in some form or another but if two people with particular bad cases coincide to make a child, the child is *generally* worse. There's also an even worse form called EDS where sufferers are in a wheelchair from birth.
This gives some sufferers chronic pain from being a baby while others just become good ballet dancers (huge amount of flexibility in the joints, which *can* wear the joints to the point that inflammation of tissue and joint damage results). My ex was a professional black belt karate instructor throughout most of her painful years (because flexing joints made them no worse, and was not a way to induce the pain - a clear sign that it *wasn't* arthritis from the very start.
In the end, we gave up on all the doctors she'd had previously, and researched it ourselves. We hit at random upon a rare condition that had almost zero information on it at the time. Apparently there was one guy in the country doing research on the condition when we discovered it (and other sufferers we met up with describe him as one of the most arrogant and ignorant doctors they'd ever met - telling tiny slips of girls that were not far off transparency that they were obese and he wouldn't treat them, etc.).
We FORCED her current doctor to refer us to a specialist. We were referred to a consultant who dealt with arthritis. However, he was bright enough to look and say instantly "You don't have arthritis, you have hypermobility" and write us off with a confirmed diagnosis that the doctor would at least accept to prescribe more suitable medication for (i.e. not arthritis medication which worsens the problem because the condition is the polar opposite of arthritis).
Beyond that, she never got much help and still has the condition. Variably over the years she's been registered disabled and able to run a karate club (though not simultaneously - the condition is always present but the severity varies greatly with seemingly random triggers and even things like the weather).
Bear in mind that all this happened in a country with free healthcare.
- Doctors can't know everything.
- Even those that are specialised in your area might not help you at all.
- Even those who want to help often can't find out enough to get you to someone that helps.
- Even those with a real interest on the cutting edge of research may be able to do no more than prescribe a painkiller and sign a form for you.
- The human body is more complicated than any one person, or even group, can ever understand.
But, that said, we went to great lengths to avoid quackery. At a residential weekend for sufferers, there was one true doctor who gave a short 10 minute presentation and then tried to escape before he got hounded for everyone's personal problems. 50% of the rest were salesmen trying to flog memory foam pillows and other junk to "help your condition". The other 50% were nothing more than charlatans (I shall never forget being in a Reiki healing class for moral support - against my will - and there being a ten-minute interlude between the instructor and a student where one "saw colours" with her eyes closed and then they discussed how insightful and "in-touch" with Reiki that made her while
Homeopaths? Chinese doctors? Spiritual healers? "Uniting their contributions" is going to drag the net worth of the resulting mess down to below zero...
Reading your comment, it appeared to me that you rejected these alternative methods right away, but after reading it another time it's more about the "uniting" part. I have tried many alternative cures for my fatigue problems, like acupuncture, haptotherapy, ayurveda and more. I always try to find an explanation for things that work. I've tried Ayurveda, and although I have no idea what happened, it worked for me like nothing else. I didn't have to do anything, no herbs or pills, no difficult conversations, just laying down and let the therapist do the work.
Normally these alternative therapies work one day, because you relax, somebody pays attention to you, and after a day most of it is gone. With ayurveda, the first time I noticed barely an effect when I left, but the next four days were much better. For the next three months I went weekly, and by then the effect spanned a week. I kept on doing it at a lesser frequency for about two years, and it helped me a lot. Many times I tried to analyse what the therapist did, but I couldn't explain it.
In this sense, it could help cancer patients, as well as any patient, if they are open to this kind of therapy. Not by curing the cancer, but by making the patient stronger, and that could just be enough to support other treatments like chemo.
See Lorenzo's Oil
Set your phasers on "funky"!
...or, alternatively, another researcher's "Electric Field" treatment?
I learned of Texas-based Burzynski's successful cancer treatments
from the documentary movie:
+ "Cut, Burn, Poison"
I learned more about them from another documentary film
(recently re-released, in an extended edition,
which now includes 2 DVD's); the title remains the same:
+ "Burzynski - Cancer is Serious Business"
I recommend both movies to folks with cancer, as well as a talk
at http://TED.com on the "electric fields" treatment.
Not to be all grammar Nazi (prepare for incoming grammar and spelling mistakes), but I think you meant "QUOT CAPITA TOT SENSUS". When I looked at your version, it made no sense (That head many counts.). Then I thought about it. "One head, many opinions"
But think about it this way - a big part of the reason for sharing such information and making it commonly accessible is to enable the automation of pattern-finding.
This is tough to do with patient records scattered through fifty thousand different hospital databases. With those 130,000 cases online, you're going to start seeing commonalities in various reactions to treatments, statistics, etc. which in turn will make it much easier for researchers to begin understanding what combinations of cures/treatments may or may not work - leaving the "weird" ones that don't fit into any patterns to the Jimmy Lins.
Cole's Law: Thinly sliced cabbage
"to the detriment of bigger charities that are far more efficient"
Support universal health care. Experience shows it's a much better option than giving to charity.
It's all well and good that he received all these notes from thousands of well-wishers, but has he actually FOUND anything useful for his case? Awake brain surgery is neither particularly new nor innovative; it's been in use for years. It beggars belief that his current treatment team was unaware of the technique. And I don't think all the kooks trying to cure his cancer by nutrition, spiritual healing, yoga, homeopathy, "Chinese Medicine", etc., really have that much to contribute, cure-wise.
That's true, and an interesting angle. Some of that does happen already: at university-affiliated research hospitals in particular, there is a trend towards digitizing this information and making it available to researchers (under various confidentiality agreements, and with Institutional Research Board approval), who do things like mine it for patterns. I know some people at U. Washington in St. Louis doing that kind of thing. But it's a good point that it might become more widespread if there were an open corpus to work from; right now access to the records is governed by HIPAA, which puts various restrictions on it. On the other hand, the corpus they use at WashU is possibly less biased, because it includes all patients' records, rather than only those who have chosen to opt-in by putting theirs online.
10 PRINT CHR$(205.5+RND(1)); : GOTO 10
Zombies can cure cancer: they'll just as happily devour your brainz whether you have it or not. "You will be assimilated. Resistance is futile. Your distinctiveness will be added to our own."
I agree with 99% of the above post, and also with the fact it's novelty alone that makes it standout (and that universal healthcare is better than spending the same amount on a single person however pathetic his story).
Still, outside becoming famous Iaconesi got something he would never have reached without his initiative : he raised the attention of various, famous physicians.
Basically, he's about to obtain a cure "à la Steve Jobs" without the money.
Which is wise.
For a single person.
Herve S.
I'd suggest he research rio virus to see if there is hope for use against his type of tumor. Unfortunately the links in the summary do not provide a place to add to the 200,000 responses so far. There IS a nifty little list/chart of key words which does not currently include Rio or Virus. OTOH outside of a clinical trial I don't know how one would deliver such virus in his case - it's not like you can have a kid with a cold spit on your brain ;-)
I live in a country with universal health care, and glad I am of it too. I needed surgery at 17, and it was done fairly neatly and fairly efficiently. I had never had a job, so couldn't pay, and my parents had several other kids to look after, so wouldn't have much relished a US-style hospital bill....
Got them moderator blues I blieve I walk out the do', With these mod-points I been gettin', I 'most never post no mo'
It also also sounds like the same asshat throws as many posts at Slashdot as what they can in a day to make themselves feel good about how pathetic they are.
Funny this. If I just put your name, "AC" in your very own post - it fits perfectly!
Just STFU or login if you have any balls left.
Faster! Faster! Faster would be better!
http://www.sott.net/article/228583-Scientists-cure-cancer-but-no-one-takes-notice
The people researching this cure are outraged that big-pharma refuses to help them, especially since it seems to be 100% effective even against cancers that are leathal... No human trials yet, but lots of recorded history for the drug and all point to it being safe and effective.
Qybix
Qybix ----- I do not have a belief system; I'm an Anti-theist and proud of it! Saying that not believing in anything i
At the same time bigger charities are sometimes very inefficient. hundreds of thousands of dollars can go for salaries and even more might be spent on advertising.
Troll is not a replacement for I disagree.
I'm sorry that people get cancer.
Making this sort of medical data available to any researcher with an itch for free is useful.
I also agree on the flip side better organizing online moderated and professionally reviewed resources to educate and provide legitimate advice and treatment options is also beneficial.
At the same time encouraging others to follow this same path will only enrich crackpots and scam artists selling their cures and assorted bs which simply does not work.
Even the better moderated cancer forums are filled with well intentioned people telling us all about how by ignoring doctor x they got y result therefore doctor x was wrong or worse in bed with the medical industrial complex...
Internet style colloberation/crowdsourcing fails spectacularly when the voices only qualifications are having stayed in a holiday inn express last night.
The criticism of that idea is that you'd be reinforcing the superstitious beliefs of people who already believe in homeopathy.
A better criticism is that it costs real money and real resources to administer this "treatment" which can and should be better spent on something proven to actually work. Money and time are in finite supply and I would be rightly pissed off if my tax dollars were used to pay for treatments that are demonstrably bogus and unethical.
Exciting isnt' it? How a new market for information agregation to further medicine would evolve from open sourcing the research data from clinical studies. Instead we'll rely on the out dated model of big pharma wasting resources by performing and repeating the same closed door research backed by different capital interests.
www.prayernetministries.org/
He made the lamer walk.
Chinese doctors? As a chinese person, I feel like we can safely ignore the opinion of "Chinese doctors" (the kind that perform Chinese medicine, rather than Chinese doctors who perform medicine), without giving it a second thought. No I can't be 100% sure that there is not something to Chinese medicine. I also can not be 100% sure that there is not something to Viking medicine or African witch medicine. China has a culture that is thousands of years old, and yet they are still prescribing rhino horn and tiger penis to cure erectile dysfunction. Curing diseases is not easy. Even Western medicine is far from perfect. It is however infinitely closer to going down the right path by decoding the language of DNA, folding proteins, and performing scientifically controlled tests. Many times the "scientific tests" turn out to be BS, but at least there is a coherent standard in science to label a scientific study BS. In Chinese medicine there is nothing like clinical trials or statistical analysis. It is dark age quackery. If you want dark age quackery to have a say in the public sphere, fine. But at least be fair and allow ALL quacks to have a say. Let the guy who thinks dolphins cure cancer be treated with the same consideration. Let the people who think plants have feelings weigh in on how to cure cancer. Let the psychics look into the future and tell us the chemical structure of the cancer cure drug. Their opinions are no less valid than those of Chinese doctors.
I treat people with brain cancer for a living in a university hospital. As someone once said, 10 barbers won't make your haircut 10x faster. In the end, if his disease is bad, there is simply not much to be done today in order to obtain a cure. When I say "bad disease", I don't mean stage or grade or histology. I mean the specific population of cells with the specific DNA alterations that he has in his head. His best chance is probably in a clinical trial. Believing that we somehow, somewhere, have a cure for his disease and getting access to it is just an act of publicity is unfortunately naive.
He probably has a better chance using this method. Assuming he can attract the right attention, of course.
Yes, if all he gets are a bunch of stories, some life affirming notes, some neat-o brain surgery ideas and his tumor's DNA sequenced, then it's not going to do much good. If, on the other hand, he finds out about some procedure that is actually helping people that his current doctor's may not be aware of, then it will be worth it.
Remember, your doctor is only as good as what he knows, and as good as he might be, he is not omniscient. He won't have read all the journals or be able to keep up with the research on all paths. Nor will he likely have the time to spend all his time on your case. Here we cue the brain surgeon/oncologist who has a 90% success rate with a novel form of surgery, but he basically either works locally or just for the rich and powerful. That other doctor may well recognize something about this guy's case and tell him exactly what he needs to do.
This is a good idea, and honestly, could well work for him. You've got people like Magic Johnson who are alive and in reasonably good health today despite contracting what (at the time) was a very fatal disease. If you have enough money and notoriety, you can beat things other people can't, and often, that is just as much due to knowledge as it is to any fancy, expensive treatment.
If you are science-minded and are interested in the history of cancer research and the state of the art, I can't recommend this book highly enough:
http://www.amazon.com/Emperor-All-Maladies-Biography-Cancer/dp/1439170916
I'm not a physician or a scientist, but I spent years on a team with both in a cancer research lab, and everything in the book is consistent with the science I have picked up along the way. It's also very readable. I give a copy to everyone I know who has to confront a cancer diagnosis.
There's a better way to crowdsource knowledge: markets. Create markets that let people bet on whether X is the thing that will cure this cancer, and whether it's curable at all. If enough people participate you'll get your best chances out of the soup.
If video games influenced behavior the Pac Man generation would be eating pills and running away from their problems.
reducing stress, being thankful, and more simple things that help prevent, and sometimes cure, cancer: http://www.changemakers.com/discussions/discussion-493#comment-38823
Example: http://www.livestrong.com/article/251358-vitamin-d-and-brain-cancer/
"Another study found that three out of 11 patients with tumors went into complete remission after being treated with vitamin D."
See especially:
http://www.vitamindcouncil.org/health-conditions/cancer/brain-cancer/
http://www.drfuhrman.com/library/article24.aspx
A 21st century issue: the irony of technologies of abundance in the hands of those still thinking in terms of scarcity.
To Mr Laconesi: --------------------- Radiotherapy is a more precise technique for treating localized cancer compared to chemotherapy. It is still exhausting, leaving one weak after each treatment. Unfortunately, it tends to affect surrounding tissues to a certain degree, as the method of targeting the cancerous tissues can be somewhat imprecise. Again the use of alpha rays tend to create complications later on, as alpha rays have been documented to cause cancer (verify if this concept has not been refuted). I would like to suggest considering using a biochemical technique to "light up the tumor" (luminescence) i.e making it visible so that it can be targeted more accurately by beta radiation. There was a technique I read about after my treatment that involved using "nano bees" to deliver toxins to cancerous cells. Mentally, visualizing yourself healing and your body getting rid of the tumor and toxins was a great help in my case. (Sounds crazy right? But us humans don't have proof or explanation of everything. Humans are not only physical beings.) My opinion: ---------------- Exploring alternative methods (Chinese medicine, Hemeopaths, etc..) is a very wise decision! It shows that you have the determination. You will get through this. I did. I met with a few homeopaths and practitioners of Chinese medicine (tai-chi, accupuncture, etc.) that helped with pain management and immune boosting, etc. It wasn't a cocktail of medication. It was a series of specific brain stimulating exercises based on knowledge acquired since probably more than 3000 years. Documented cases (Ireland @ Royal College of Surgeons - Sam Li) of severe cancer patients also adding the Chinese medicine to their treatment and surviving. "When there is life there is hope". There no guarantees in life, but why not try. If we had closed minds, we would not discover things like Dark Matter, Quarks, Gluons, and Leptons ... oh my.