Read This Quick...

hummingbyrd Member Posts: 950 Member
edited March 2014 in Breast Cancer #1
Apparently CSN has decided to censor my posts, either that or I am terribly mistaken and a post I typed just never made it to the here goes again.
From CSN
"The discussion boards, as well as the other features of the Cancer Survivors Network, are designed for the exchange of support and anecdotal information, which includes treatment information within the context of personal experience. The goal of this exchange is to facilitate support and encouragement amongst our members. Posting medical information out of this context lends itself to appearance of the promotion of specific treatments and/or research with would be a violation of the terms and conditions of the Cancer Survivors Network. Discussion regarding treatment options and how they relate to you or a loved one's personal cancer experience is always encouraged."

According to this statement, the way I read it, if I come across some new treatment I cannot share it with the board until I or someone I know has had experience with it.
For instance...
Spice Halts Breast Cancer Spread in Mice
Stops Cancer Caused by Long-Term Chemotherapy

Curcumin, the pungent yellow spice found in turmeric and curry powder, prevents breast cancer from spreading to the lungs in mice, a significant discovery paving the way for human studies, researchers say.

Researchers also found that curcumin, a nontoxic natural substance, not only repelled progression of the disease to the lungs, but also appeared to reverse the effects of paclitaxel (Taxol™), a commonly prescribed chemotherapy for breast cancer that may trigger spread of the disease with long-term use.

“We are excited about the results of the study and the implications for taking the findings into the clinic in the next several years,” says the study’s principal investigator Bharat Aggarwal, Ph.D., professor of cancer medicine in M. D. Anderson’s Department of Experimental Therapeutics. “At this time, advanced breast cancer is a difficult foe to fight with few proven treatments available after surgery, chemotherapy and radiation therapy.”

Spice also reverses chemotherapy effects

The study, published in the Oct. 15 issue of the journal Clinical Cancer Research, reports that the spice appears to shut down a protein active in the spread of breast cancer.

Because Taxol is so toxic, it activates a protein that produces an inflammatory response that induces metastasis (cancer spread). Curcumin suppresses this response, so that the cancer does not spread. In fact, researchers found that adding curcumin to Taxol actually enhances its effect: Curcumin makes the therapy less toxic – and just as powerful and effective.

Curcumin and Taxol combination most effective

Taxol is currently used as the front-line chemotherapeutic agent in breast cancers, but because it frequently induces drug resistance after prolonged use, it is not effective in treating metastatic breast cancer, Aggarwal says.

His research team studied 60 mice with breast cancer, which were randomly assigned to one of four groups. Tumors were then surgically removed, and mice in the third and fourth groups were fed a curcumin diet.

Results in the four study groups:

Control group – (No Taxol or curcumin) 96% of mice developed metastasis that could be seen by the naked eye (macroscopic disease).

Taxol alone – Researchers found “modestly reduced” cancer metastasis.

Curcumin alone – The spice produced a “significantly reduced” level of lung metastasis.

Curcumin plus Taxol – This group had a “significantly reduced” level of lung metastasis. There was no macroscopic disease present, but microscopic metastasis (visible only under a microscope) was found in the lungs of 28% of mice who received curcumin and Taxol. The microscopic cancer consisted of only a few cells, suggesting that the combination of curcumin and taxol inhibited the growth of breast cancer cells that were in the lung before the tumors were removed.

Curcumin has been successful in other studies

The findings build on a previous study published in the Aug. 15 issue of the journal Cancer, in which M. D. Anderson researchers found that curcumin stopped laboratory strains of melanoma from growing and forced the cancer cells to die.

Related story:

Spice Blocks Melanoma Growth in Lab Tests

Now if I have to follow CSN rules I may have to take this stuff for 6 months to find out if it works. I don't know about the rest of you, but for me if anyone hears of potentially good news let me know ASAP. In our world EVERY day counts!

I'm not advocating turmeric, I'm just sharing info AND I thought practicing my right to free speech.
This is the SURVIVOR'S board and sharing info can sometimes be vital to surviving.
How does the board feel?


  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    By the way, the above exerpt comes from the MD Anderson website.
  • roxanne53
    roxanne53 Member Posts: 154
    I am not real sure that their intent is to censor your posts here. I do hope not! I am not sure why I would not be encouraged or supported by hearing more information and treatment options available for myself or others.

    I would suggest that information be always referenced as to where the information came from that be website or personal or any other form of knowledge. source is important to continue personal review/research.

    I had the occasion to read some information about breast cancer from Medline Plus affiliate of Nation Institute on Healh. (some time in the past)
    I posted here after some thought, because I wanted people to see and read as it may help someone else searching for more information and options to research. ( I remember feeling actually guilty if not posted because I had some knowledge that may help another.)

    I am sorry this is happening.
    God Bless
  • pammycake
    pammycake Member Posts: 35
    Happy New Year!! I wanted to let you know that I did read your post from before. If it's gone now, just know that I did read it and I'm sure a lot more suvivors did too!!
  • krisrey
    krisrey Member Posts: 194
    I did read your post the first time and wondered what happened to it.
    I personally don't see a problem here, like roxanne said as long as it is sited allowing us the opportunity to check out the information further if we want to.
    I for one appreciate hearing about new things when people come across them while doing research.
    Is it my imagination...but I seem to recall tons of postings that people post about things they find and articles with new information????? In addition to support others with bc and share personal experiences with treatments and such..I also thought this site was for sharing information in general.
    Just my thoughts.
  • mssue
    mssue Member Posts: 242
    Happy New Year!
    I too read it and was mulling it over before answering came back and it was gone-this time I printed it.I have to agree with Roxanne and Kristen-and our rights to research for ourselves should not be infringed upon.
    Best Wishes for a happy and healthy and if we are Lucky a Wealthy New Year!
    God Bless You All!
  • tlmac
    tlmac Member Posts: 272 Member
    I don't think the administrators of this board care what we think. It seemed pretty clear from the responses you got to your first post that the survivors prefer access to any and all information. That didn't stop CSN from eliminating your second post. This board serves a valuable purpose and has done a lot of good for many women over the years but, clearly, we don't always agree with the way it's monitored. The bottom line is it's their board and they're exercising control over it. They don't seem open to putting this to a vote. I wish you luck in changing their views on censorship. You get my vote.
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    Dear Friends,

    As stated previously, we encourage members to share their practical wisdom and experience. This naturally includes discussion about treatments. You do not need to have experienced a treatment first hand to discuss it. This is evident in the thousands of postings on our CSN discussion boards. That said, it's important for members to understand that the CSN is first and foremost a peer support network, not a medical or scientific site. If you have information to share with one another about studies, articles, events, etc. all you need to do is tell folks where to go to access the information. Posting journal articles is simply beyond the scope of CSN.

    We ask that you do not copy and paste journal articles onto the discussion boards. If you would like to direct individuals to research that you wish to share that is appropriate and relevant to the discussion, please provide a URL to the location of the research. In this way, interested members may access the information if they so choose. In this way, they have full access to the original source and greater ability to determine reliability of the information. This also reduces any appearance of impropriety regarding promotion and solicitation.

    Take care and be well,

    CSN Dana