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This is a great article and while Daniel may be on to something, the sad truth is: It doesn't f*ing matter. Here's why:

When my wife and I lost our two year old daughter to cancer we started a nonprofit to raise money "for research" we thought. What we found when we got very prominent doctors behind closed doors is a system of bureaucracy that has led to the ineffective local maximums in research that have left heavily funded diseases such as Neuroblastoma (MYC-N amplified) with an increase in survival rate that amount to a rounding error.

I'll keep this short so it doesn't turn in to a tirade. 1. Doctors tend to want to study, and grant advisory committees tend to want to fund INCREMENTAL research. Anything that is not incremental on something that is being done prominently is considered "high risk". Good luck with your out of the box thinking. You'll be labeled a hack and your career will end.

2. Many doctors who apply for and receive grants from cancer research foundations do so only because it is a good source of funding for their life's work if they can construe it to in some way have an angle on cancer. A real life example would be studying the immune systems of Zebra fish because: an immunotherapy discovery in the similarly functioning immune systems of Zebra fish might create a model that is applicable to humans. I've been told behind closed doors that it's flat out bullshit, he probably has studied the immune systems of fish his whole career.

I was flat out asked by the director of a major US cancer research center to just give them money so that the could continue to keep certain researchers on salary.

Lastly, we want to fund a study into using THC (yes, from Marijuana) as an option for children with cancer because it positively affects three major areas of children with cancer: pain, nausea, and appetite. Right now we pump them full of IV nutrition, anti-nausea meds, and morphine. All of which is very hard on their little bodies. Top cancer research doctors are horrified of the light this kind of research will cast them in so good luck finding someone who will do it, much less sit on your board.

I could go on forever but I'll leave you with this. My wife and I lived on PubMed and Wikipedia while our daughter was sick. We wanted to understand everything, and you know what we found? The very first question that every single parent who has a child that is diagnosed with cancer asks: "What can I feed my child?" They have to say "we don't know.". Search PubMed, you won't find a single study related to nutrition and solid tumor cancers in pediatric patients. That's fucked up, and its because of the bureaucracy and entropy in the research community.

We'd like to break that mold, but first we'll need to raise a lot of money. Shameless plug http://laylagrace.org



Sorry for your loss.

My sister has been battling cancer on and off for over 10 years. She has done a lot of her own research (ie reading up on stuff) and used supplements and nutrition to help keep her alive in addition to traditional therapies. She has had four occurrences of cancer with at least 3 different "types" of cancer (I don't recall the names, but various breast cancers basically). She has also expressed her frustrations at these specific things: a) Cancer research is all variations on a theme, with almost nothing really new/different. b) There is no real solid information on nutrition and doctor's reply to inquiries about nutrition with answers which essentially chalk up vitamins like they are placebos whose sole value is psychological comfort.

My mom and dad have both had cancer twice. My mother's mother died of cancer and she has several sisters who have had either breast or uterine cancer. So it seriously runs in the family and my family has a high survival rate because of the family tradition of looking to nutrition and the like and not just putting things in the hands of doctors. My mother kept father alive when doctors expected him to die. One of his doctor's interviewed her on tape for two hours and changed some of the practices of his clinic based on what she told him.

I've used nutrition, among other things, to effectively combat a different "dread disease" for me and my oldest son. On the up side, nutritional approaches do not require your doctor's permission. You don't need a prescription from him. You don't need to run it past the FDA or some such. So this is a space ripe for guerrilla warfare, so to speak. :-)

Good luck with your goal to get something meaningful done in this space.


So it seriously runs in the family and my family has a high survival rate because of the family tradition of looking to nutrition and the like and not just putting things in the hands of doctors.

Couldn't it be that your family's survival rate isn't due to nutrition?

It might be, but it might not be. Our ignorance is just as likely to kill us. For example, perhaps your family does have some natural survival mechanism activated by certain foods, but maybe it has the opposite effect for someone else.

This isn't just hypothetical speculation. When the Black Plague hit, some people were convinced that cats were contributing to the problem, so they killed them. But the rats were the carriers, not the cats. And so by killing the cats, the rat population ran rampant, which seriously deteriorated the overall situation.

They had the right idea --- "some animal is carrying the disease, therefore we should kill that animal". But they didn't know, so it wound up killing them instead of helping them.

Maybe you have the right idea about nutrition, but you don't know --- so you're gambling with people's lives by telling them things that may only make the situation worse.

On the other hand, your family is basically conducting research. You should document and publish your methods and observed results. Maybe you're onto something.


This isn't just hypothetical speculation. When the Black Plague hit, some people were convinced that cats were contributing to the problem, so they killed them. But the rats were the carriers, not the cats. And so by killing the cats, the rat population ran rampant, which seriously deteriorated the overall situation.

My sons and I have talked about that and have wondered if killing the cats ultimately helped. As I understand it, ultimately some other rat population crowded out the rats that were carrying the vermin. Perhaps that was more effective (and perhaps indirectly supported by reducing the cat population). I don't have the answer, I am just saying I have wondered if a different conclusion is in order.

Couldn't it be that your family's survival rate isn't due to nutrition?

Sure. It could also be that I got well with cystic fibrosis by sheer luck and happenstance. However 10+ years of steady forward progress seems to imply otherwise. :-)

FWIW: When my dad had colon cancer at the age of 69 and wasn't diagnosed until after he lost half his body weight, my parents focused heavily on hydration. They calculated how much fluids he needed daily and anything containing caffeine did not count. (Alcohol would not count either but my dad gave up drinking many years earlier.) When he was really nauseous from chemo, she made him homemade "slushies"/milkshake-like drinks. She used ice cream, milk, and fresh or frozen fruit...not sure what else. When he was too sick to tolerate that, she used ice, frozen fruit and fruit juice. On bad days, he got this twice a day in place of meals. She was putting so much weight on him at a time when most patients are losing weight that his doctor basically yelled at her for it. He has a long-standing heart condition and the doctor was concerned that regaining so much weight so quickly would put too much strain on his heart.

My mother also came up with some excuse for him to miss one radiation treatment a week. She watched her mother die from cancer in her teens and she is convinced that the radiation killed her. I have been told she came up with excuses even though she kept his skin in such good shape that he never had radiation burns, which is apparently a common reason (especially with older people) for delaying treatment. She used Penaten cream (a German product for treating diaper rash) to keep his skin in such good shape. My understanding is this product was adopted by two different cancer clinics because of her use of it on him. She also used it to help his 13 inch surgical scar heal better.

I also used adequate food and hydration to break my sister's fever the first twenty four hours after she was home from the hospital following her first mastectomy. I have always put more emphasis on hydration with my sons and my own health issues than on eating. It takes 2 to 3 weeks to starve to death (or more in some cases). You can die from lack of fluids in as little as 2 days. Dehydration can be misinterpreted as hunger and this probably contributes to obesity and is probably why drinking a great deal of water is a dieting technique that helps some people lose weight.

Maybe you have the right idea about nutrition, but you don't know --- so you're gambling with people's lives by telling them things that may only make the situation worse.

I do wrestle with such questions. I have a website where I try to share information about how I got well. I often wonder if it should come down. Though I worry more about people misunderstanding it and thus misusing it and getting into trouble that way. The approach itself is very conservative, much more so than conventional medicine. And we all impact our body chemistry every single minute of every single day with myriad small choices, starting with every single thing we eat or drink. Study after study after study indicates that diet and lifestyle play major roles in every major deadly disease but then when you come down with something doctors have no idea what to tell you about nutrition. The state of the art nutritional advice for my condition -- where having a dietitian on staff is common for CF clinics -- is to recommend a "high fat, high calorie, high salt" diet. In practice, this means they actively encourage people with my condition to load up on junk food. This runs counter to my experience of what works. It also is the opposite of what most folks with my condition are doing who have better than average success in the face of this problem. So I am hardly the only one, my example is just more dramatic.

So, for now, I leave the website up and struggle with how to better convey what I understand. Because I think it is clear and well established, even in "conventional" mental models for health, that diet and lifestyle do make a big impact and since no one can stop eating entirely or cease to have a lifestyle, it seems to me the only sane thing to do is try to encourage and support better education and mental models for those pieces of the puzzle.


Thanks. For what it's worth, I think you're doing the right thing and are acting responsibly, and making the best of bad situations.

Also, that's an interesting hypothesis about the Black Plague. I hadn't heard that before. Thanks for sharing.

Best of luck to you, and I'm glad we have the chance to learn from your hard-earned wisdom.


For future reference, what nutritional advice do you have?


There's a website (listed in my profile) where I talk a bit about what I've done for my condition (which is atypical cystic fibrosis). There is nothing on the site specific to cancer. I did take care of my sister briefly following her first mastectomy, but I have not written about that on the site.


I'm so sorry man.

I'm sure you've seen this video, but for anyone who hasn't, it's extremely relevant.

http://www.youtube.com/watch?v=8rWZtnY_Tp4


Yes, thanks. They Hydes and I are trying to work together on something.




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