MBCaware.org

[Paula O]

OOOpps--can't get a cool poster to go through but found a similar one here:
http://mbcaware.org/

Anybody familiar with this organization?
Paula

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[rhondalea]

Here's METAvivor's "about us" page, which will tell you more about what they do with the money:

http://www.metavivor.org/AboutUs.html

Thanks for the reminder--I just tweeted it again. I'm sure some of my followers are sick of me, but it's worth it.

I believe this is the poster you wanted to share:

[Paula O]

Yep, that's the poster all right-- somebody creative did a great job thinking that one up--thanks for sharing it and the "about us" info link, Rhondalee.

I wonder how breast cancer patients and others could band together and change up those awful statistics in that poster and get more research and funds going in that direction. Any brain storming ideas anybody? Maybe thoughts that could get kicked around and considered with and by people in the know in San Antonio in December---people who hopefully can do something about good ideas to get better treatment and eliminate breast cancer?
Paula

[rhondalea]

I received an email about the campaign this morning:

"The Elephant in the Pink Room" campaign is a great success, raising almost $12,000 so far! Please continue to visit MBCaware.org, share the campaign image, and retweet the campaign tweets!

Through our partnership with Eisai, we have a great opportunity to add $25,000 to the METAvivor research fund. EXTENDED through NOVEMBER 30, every VISIT and ACTION taken on www.MBCaware.org will trigger a $1 donation (up to $25,000) from Eisai!

We hope you will join us in promoting this campaign and helping to make millions of people MBCaware. Below are actions you can take to move this campaign forward.

Sincerely,
The METAvivor Board

These are the things you can do to help:

Twitter: During the next two months every tweet of #MBCaware will trigger a 1 dollar donation. Please use this hash tag as often as possible!

Facebook: Share our campaign images on your wall! Each share is another $1 dollar donated. It's simple, just visit this link and click the "SHARE" button!

Forums: If you are part of online forums please share information about the campaign and promote the campaign link: www.MBCaware.org

Bloggers: Please tell your readers about the campaign! For images and info about the campaign you can visit this link. Want more information or an interview with MBC patients? Contact metavivor@gmail.com.

Here's what's really sad: the campaign has been active all this month, and even though it only requires clicking, they've only been able to raise $12k. It's ridiculous that "breast cancer awareness" simply does not include metastatic disease.

[Nancy L]

Only 12k is very disappointing. Until the primary focus of breast cancer awareness is metastatic disease I doubt much will change in funding and campaigns like this. I drafted an e-mail message with this poster and a person message and I sent it to a lot of people urging them to donate to metastatic research. The messages I got back mostly were "I had no idea". But we have to remember Human beings do not want to hear bad news, especially things that could happen to them, and 40K+ women dying each year is not what the media wants to talk about. I have often thought if during the month of October instead of pink everything, the TV channels had a ticker tape display at the bottom of the screen (like is done for sports scores or stock prices) with the names of all the women and their age at death from the previous year, if this would scare people enough to demand research be focused on the real killer. We also need a high powered person to pound this message home. People have to get outraged. If Romney gets in office, I am hoping Ann might be that person. Although her breast cancer was stage 0, she still has a 4% chance of metatisizing and I know from hearing her talk that it is still on her mind. Of course, MS is probably her biggest worry right now.

All Physcians and researchers have to get on board too. They need to demand metastatic disease be the focus rather than more chemo dmrugs. But we have to realize that a new treatment drug is where the money is for drug companies, physicians and researchers. If they discover the answer to metastatic for breast cancer, I believe it will also answer the puzzle for other solid tumors too. A big return on the research investment. I don't believe health care costs can ever be controlled if we don't eliminate diseases. More people being diagnosed and treatment cost skyrocketing won't result in costs going down. We need to get smarter and work on this in a very targeted way.

i lived my sisters breast cancer journey for eight years and I have been dealing with my own diagnosis for almost nine years. The things I have heard physicians say. Many physicians just have a very hard time communicating that they're not going to be able to cure the patient. If the answer to metatasis is found, the won't have to deliver bad news.

[Paula O]

Great timing--thx for all the info. I passed it along.

Paula

['lizbeth]

I find this very confusing. The majority of clinical trials are for metastatic breast cancer. I had to search long and hard for one for early or primary breast cancer.

To be honest, I have gotten the impression that from the significant amount of funds raised by the pink campaigns, only a small portion goes to any type of research - most is put back into the organization, or paid out in salaries.

But it doesn't matter. Patients are not enrolling in clinical trials. I don't care if the "cure" for cancer is found tomorrow. We won't get it. If it takes 5 years for full enrollment, and the trial takes 5 years to accumulate the data needed for approval at the FDA, then it won't help most MBCers.

Raising funding is just part of the cure, the other part depends on us, the cancer patient. The white elephant is also lurking in our living rooms, in our doctor's office and at the infusion rooms across America. We've got to enroll in the clinical trials.

[Nancy L]

Most clinical trials I read about are testing treatment options to extend life. The research MBCers need is to uncover why 30% of all breast cancers metastasize and then for drug companies to develop drugs to prevent it from happening or drugs to make MBC at a minimum treatable as a chronic illness. Because of the genome project, more is known but there are only a couple hundred researchers and 5% of research dollars allocated to solve this puzzle. And my reading tells me research collaboration is not what it needs to be.

['lizbeth]

Nancy,

Oh yes, this is true - most have focused on extending life. I was sooooooo lucky to get into a vaccine trial that focused on preventing a recurrence. That gave me incredible peace of mind, but I just finished the boosters . . . so I'm kind of hanging in the wind waiting to see if I'm one of the lucky ones.

Since research is competitive, collaboration is out - unless the system is changed to reward collaboration.

I'm concerned about what happened with my friend - she's BRCA positive and had difficulty with a clinical trial because the company decided the market wasn't big enough. Since companies can patent genes - these patents might prevent much needed research by other companies. Then all the research money in the world will be a mute point.

[rhondalea]

I do not have metastatic disease, but in the hope of contributing research, I nagged my oncologist to find a trial for me. She failed to try, so I found a trial on my own (the metformin trial).

I continue to look for other trials that I can do at the same time, but there are few.

My hope is that Genentech (or anyone) will collaborate with 23andMe to study early stage women. That would be a great one.

['lizbeth]

Thank you for being proactive and finding a clinical trial.

I was lucky, my first oncologist was not helpful, but the next one was very supportive in helping me get into a clinical trial. I hadn't come to the understanding that I could just enroll. I had a wonderful experience with the GP2 vaccine trial and I highly encourage it. I know your trial will help us gain valuable information and look forward to seeing the data that is gained. And may you be super healthy!