4 ms·

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 ol

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 http://laylagrace.org

Mz 15y ago
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.
- klbarry 15y ago
  For future reference, what nutritional advice do you have?
  - Mz 15y ago
    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.
- palish 15y ago

Mz 15y ago

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.

klbarry 15y ago
For future reference, what nutritional advice do you have?
- Mz 15y ago
  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.
palish 15y ago