6 ms·

Ask YC: How to Start a Cancer Wiki

14 points by adammichaelc 18y ago

Forgive me for being a bit more personal than HN normally gets. The people who read Hacker News are among the brightest, most productive, and most creative people I've associated with. That's why I'd like your advice, and your help. My dad was diagnosed with nasopharyngeal cancer about 2 months ago. My family and I have watched him go through weeks of radiation treatment. After burning his neck & the tissue inside his throat, it hurts him to eat. With all the side-effects from drugs and treatment, and after only 1 round of chemotherapy, he has decided to stop the chemo. This has devastated my family, and I sit and wonder what to do. I decided to start researching alternative cancer treatments, and set up http://KancerWiki.com (using the open source PM Wiki) to organize my research. I have a few questions. 1. Do you have any suggestions for how to get the help of others who might want to help? Perhaps people whose parents or loved ones are similarly suffering? There are probably other people out there who have already gone through something similar & it'd be great to hear from them about non-traditional or modified-from-traditional methods of treating cancer (there seem to be a lot of hoaxes and scams out there for cancer treatment, so I'd like to find scientifically-verified treatments). 2. Does anybody know the story of how Wikipedia or other popular Wiki's have spread? 3. Does anybody here want to help in any way? Things I need help with: 1. Posting information about non-traditional (but science-based) cancer treatments. 2. Organizing and building the site. 3. Spreading the word about the site. Thanks! I look forward to hearing back from you. http://www.adamchavez.net/blog/contact/

norbert 18y ago
Have you seen this talk: http://www.ted.com/index.php/talks/eva_vertes_looks_to_the_future_of_medicine.html http://www.ted.com/index.php/talks/eva_vertes_looks_to_the_f... You may wish to add it to the wiki as a "non-traditional but scientifically verified" way of thinking of cancer. Very interesting. I wonder how far she got with the research since 2005.
JimmyL 18y ago
While it's a somewhat different focus (more technical as opposed to patient-based), the most successful medical wiki I can think of is http://www.fluwikie.com/ http://www.fluwikie.com/. As for the latter two of your posts, I would check out the existant support forums for the particular type of cancer you're going to focus on (I say this assuming that some forums or Yahoo! mailing lists exist out there, as they seem to for just about all diseases).
Allocator2008 18y ago
I am not a doctor, but I did a quick google search on this, and came up with this article, http://www.sciencedaily.com/releases/2008/06/080628155300.htm http://www.sciencedaily.com/releases/2008/06/080628155300.ht... relating to white blood cell therapy, whereby the immune system is stimulated to try and counteract the cancer. Such avenues could be worth looking into, though again, I am not an expert.
iamdave 18y ago
You can start by not needlessly spelling cancer with a k. My best however, to you and your family.
- rms 18y ago
  Cancrwiki.com is available. :)
- ericb 18y ago
  Have you ever bought a domain? I see this meme continually and even on threads on hacker news. Do laymen really think that people are choosing these silly spellings because it is "the cool thing to do?" FYI, to a ridiculous extent, all reasonable, 10 characters or less, English or English-ish domain names are occupied by squatters. I am not the OP, but so you understand the depth of the issue, I invite those who upvoted the parent to try finding available cancer-related domain names that would be appropriate. Submit 10 at the link below. If by some chance you do find a good one, why not report back and help out the op? http://www.123cheapdomains.com/domain-registration/bulk-registration.html http://www.123cheapdomains.com/domain-registration/bulk-regi...
  - Shamiq 18y ago
    cancer-wiki.com canceria.com
rarrrrrr 18y ago
I've informally (but seriously) studied natural health for several years, and the natural health community is really quite opposed to most of mainstream medicines approaches to cancer treatment. Depending on where you're located, you may be able to find naturopathic doctors in your community. One of the best author's I've encountered in this space is Dr. Samuel Epstein -- http://www.preventcancer.com/about/epstein.htm http://www.preventcancer.com/about/epstein.htm who has a huge list of credentials/publications, and goes to great lengths to show why the structure of the cancer industry, including things like the American Cancer Society, at least in the US, isn't well motivated or well suited to promoting the most effective approaches. The natural health community's approach to wellness is fairly intrusive on the normal American lifestyle. Unless you live in a city with a really good selection of restaurants, it often means cooking all your own food and drastically changing your diet. I personally avoid all of: sugar/substitutes, hydrogenated oils, MSG/yeast extract, homogonized milk, refined grains, artificial colors/sweeteners, anything where oils are heated above their smoke point. I mainly eat raw fresh produce, whole grains, and organic meat. I've come to enjoy cooking -- it's a useful skill, both pragmatically and socially. :) Some things frequently mentioned as having anti cancer properties are maca root, and tumeric, especially when combined with black pepper. (all raw.) Some of the very high end multivitamin supplements that you find in health stores include these. Frequent sunlight without sunscreen is important too. In general, the natural health community's perspectives on many things are often counter to mainstream medicine's positions. Be prepared to evaluate some core beliefs in undertaking this research. :)
- rms 18y ago
  Frankly, I find the idea of "natural health", when pitched to cancer patients, offensive. Sure, I am willing to believe that eating more organic, raw, and otherwise non-processed food seriously reduces the risk of cancer. But prevention is not a treatment. You can't raw food your way to a cure to cancer. It just doesn't work. People die because they become so deluded. Indiscriminate as it may be, chemotherapy works. You suggest that naturopathic medicine is opposed to mainstream cancer treatment, but you don't suggest alternatives. What is an effective alternative to chemotherapy?
  - 18y ago
Shamiq 18y ago
Have you thought about using twitter? I know it may sound hackneyed, but with a legitimate cause and a project they can rally around, social media types can really help get the ball rolling.
zack 18y ago
I would tell your dad to stop being such a bitch. He needs multiple rounds of multi-agent chemotherapy, concurrent with radiotherapy. In addition, he should switch to a raw food diet and exercise as much as possible in order to boost his immune system - this will decrease the likelihood of metastasis. Or, he could buy witchdoctor therapies from KancerKure.org. His choice. Not to be harsh - I have given you the best advice given my background (one semester of Cancer class).
- almost 18y ago
  This comment is totally inappropriate. I hope that on reflection you are ashamed of yourself and will choose to delete it.
skmurphy 18y ago
Depending upon what stage the cancer is in and the prognosis for additional treatments, your father may have made a rational decision. In the end it's his decision. Instead of creating a new forum I would encourage you to consult and contribute to existing forums devoted to nasopharyngeal cancer--and other available information sources--with a focus on helping your father. This has to be your immediate priority. You might also consult http://www.clinicaltrials.gov http://www.clinicaltrials.gov it lists 115 new studies that are recruiting patients.
logjam 18y ago
My heart goes out to you and your family. It's often extremely difficult for people to go through radiation and chemotherapy. He sounds like he's in the middle of that. I would encourage you to keep talking with him and his doctors. Tell the doctors about what he's experiencing. Often there are good ways to ameliorate side effects. Insist that your father's discomfort be allayed as much as possible. Consult with dieticians and nutritionists about good ways for your father to get proper nutrition while experiencing the radiation and chemotherapies. If his physicians don't provide alternatives, consider consulting with other doctors. Often there are emotional issues at play in the face of serious illnesses that aren't addressed by doctors, or even families. Again, encourage your father and all the family to ask questions of the doctors, and get those questions answered. Listen to your father with empathy. Acknowledge and reflect his pain...and most importantly, the uncertainty you are all facing. You might consider counseling for he and/or the family. There is actually a difference between the emotional pain people struggling with serious illness undergo, and actual clinical depression (major depressive disorder). It's not out of the realm of possibility that antidepressant medication might help. I would encourage you and your family to continue down the path of evidence based medicine. You are right. There are a lot of quack "cures" in the realm of "alternative medicine" out there, designed solely to take your money.
- adammichaelc 18y ago
  Thanks for your thoughts logjam
known 18y ago
There is a belief that drinking http://en.wikipedia.org/wiki/Pomegranate http://en.wikipedia.org/wiki/Pomegranate juice every day will prevent cancer.
Prrometheus 18y ago
This is a great idea that could really help people that don't have the resources to go and get opinions from many different doctors by learning from the experience of those who do. I wish you the best.

14 points by adammichaelc 18y ago

norbert 18y ago

Have you seen this talk: http://www.ted.com/index.php/talks/eva_vertes_looks_to_the_future_of_medicine.html http://www.ted.com/index.php/talks/eva_vertes_looks_to_the_f... You may wish to add it to the wiki as a "non-traditional but scientifically verified" way of thinking of cancer. Very interesting. I wonder how far she got with the research since 2005.

JimmyL 18y ago

While it's a somewhat different focus (more technical as opposed to patient-based), the most successful medical wiki I can think of is http://www.fluwikie.com/ http://www.fluwikie.com/. As for the latter two of your posts, I would check out the existant support forums for the particular type of cancer you're going to focus on (I say this assuming that some forums or Yahoo! mailing lists exist out there, as they seem to for just about all diseases).

Allocator2008 18y ago

I am not a doctor, but I did a quick google search on this, and came up with this article, http://www.sciencedaily.com/releases/2008/06/080628155300.htm http://www.sciencedaily.com/releases/2008/06/080628155300.ht... relating to white blood cell therapy, whereby the immune system is stimulated to try and counteract the cancer. Such avenues could be worth looking into, though again, I am not an expert.

iamdave 18y ago

You can start by not needlessly spelling cancer with a k. My best however, to you and your family.

rms 18y ago
Cancrwiki.com is available. :)
ericb 18y ago
Have you ever bought a domain? I see this meme continually and even on threads on hacker news. Do laymen really think that people are choosing these silly spellings because it is "the cool thing to do?" FYI, to a ridiculous extent, all reasonable, 10 characters or less, English or English-ish domain names are occupied by squatters. I am not the OP, but so you understand the depth of the issue, I invite those who upvoted the parent to try finding available cancer-related domain names that would be appropriate. Submit 10 at the link below. If by some chance you do find a good one, why not report back and help out the op? http://www.123cheapdomains.com/domain-registration/bulk-registration.html http://www.123cheapdomains.com/domain-registration/bulk-regi...
- Shamiq 18y ago
  cancer-wiki.com canceria.com

rarrrrrr 18y ago

I've informally (but seriously) studied natural health for several years, and the natural health community is really quite opposed to most of mainstream medicines approaches to cancer treatment. Depending on where you're located, you may be able to find naturopathic doctors in your community. One of the best author's I've encountered in this space is Dr. Samuel Epstein -- http://www.preventcancer.com/about/epstein.htm http://www.preventcancer.com/about/epstein.htm who has a huge list of credentials/publications, and goes to great lengths to show why the structure of the cancer industry, including things like the American Cancer Society, at least in the US, isn't well motivated or well suited to promoting the most effective approaches. The natural health community's approach to wellness is fairly intrusive on the normal American lifestyle. Unless you live in a city with a really good selection of restaurants, it often means cooking all your own food and drastically changing your diet. I personally avoid all of: sugar/substitutes, hydrogenated oils, MSG/yeast extract, homogonized milk, refined grains, artificial colors/sweeteners, anything where oils are heated above their smoke point. I mainly eat raw fresh produce, whole grains, and organic meat. I've come to enjoy cooking -- it's a useful skill, both pragmatically and socially. :) Some things frequently mentioned as having anti cancer properties are maca root, and tumeric, especially when combined with black pepper. (all raw.) Some of the very high end multivitamin supplements that you find in health stores include these. Frequent sunlight without sunscreen is important too. In general, the natural health community's perspectives on many things are often counter to mainstream medicine's positions. Be prepared to evaluate some core beliefs in undertaking this research. :)

rms 18y ago
Frankly, I find the idea of "natural health", when pitched to cancer patients, offensive. Sure, I am willing to believe that eating more organic, raw, and otherwise non-processed food seriously reduces the risk of cancer. But prevention is not a treatment. You can't raw food your way to a cure to cancer. It just doesn't work. People die because they become so deluded. Indiscriminate as it may be, chemotherapy works. You suggest that naturopathic medicine is opposed to mainstream cancer treatment, but you don't suggest alternatives. What is an effective alternative to chemotherapy?
- 18y ago

Shamiq 18y ago

Have you thought about using twitter? I know it may sound hackneyed, but with a legitimate cause and a project they can rally around, social media types can really help get the ball rolling.

zack 18y ago

I would tell your dad to stop being such a bitch. He needs multiple rounds of multi-agent chemotherapy, concurrent with radiotherapy. In addition, he should switch to a raw food diet and exercise as much as possible in order to boost his immune system - this will decrease the likelihood of metastasis. Or, he could buy witchdoctor therapies from KancerKure.org. His choice. Not to be harsh - I have given you the best advice given my background (one semester of Cancer class).

almost 18y ago
This comment is totally inappropriate. I hope that on reflection you are ashamed of yourself and will choose to delete it.

skmurphy 18y ago

Depending upon what stage the cancer is in and the prognosis for additional treatments, your father may have made a rational decision. In the end it's his decision. Instead of creating a new forum I would encourage you to consult and contribute to existing forums devoted to nasopharyngeal cancer--and other available information sources--with a focus on helping your father. This has to be your immediate priority. You might also consult http://www.clinicaltrials.gov http://www.clinicaltrials.gov it lists 115 new studies that are recruiting patients.

logjam 18y ago

My heart goes out to you and your family. It's often extremely difficult for people to go through radiation and chemotherapy. He sounds like he's in the middle of that. I would encourage you to keep talking with him and his doctors. Tell the doctors about what he's experiencing. Often there are good ways to ameliorate side effects. Insist that your father's discomfort be allayed as much as possible. Consult with dieticians and nutritionists about good ways for your father to get proper nutrition while experiencing the radiation and chemotherapies. If his physicians don't provide alternatives, consider consulting with other doctors. Often there are emotional issues at play in the face of serious illnesses that aren't addressed by doctors, or even families. Again, encourage your father and all the family to ask questions of the doctors, and get those questions answered. Listen to your father with empathy. Acknowledge and reflect his pain...and most importantly, the uncertainty you are all facing. You might consider counseling for he and/or the family. There is actually a difference between the emotional pain people struggling with serious illness undergo, and actual clinical depression (major depressive disorder). It's not out of the realm of possibility that antidepressant medication might help. I would encourage you and your family to continue down the path of evidence based medicine. You are right. There are a lot of quack "cures" in the realm of "alternative medicine" out there, designed solely to take your money.

adammichaelc 18y ago
Thanks for your thoughts logjam

known 18y ago

There is a belief that drinking http://en.wikipedia.org/wiki/Pomegranate http://en.wikipedia.org/wiki/Pomegranate juice every day will prevent cancer.

Prrometheus 18y ago

This is a great idea that could really help people that don't have the resources to go and get opinions from many different doctors by learning from the experience of those who do. I wish you the best.