LETS GET ORGANIZED

Myra1211

I am a stage IV metastatic bone mets survivor and we need to get organized to make things happen. NO MORE PINK RIBBONS OR FOOTBALL HELMETS OR YOGURT CUPS!! We need to get ourselves out from under the fluff and make things happen. No one can do this without us making it happen. Lets write our congressional leaders, lets form rallies, lets start a "bucket" challenge, something to get us noticed. Enough being complacent....lets move!

dlb823

Myra, I'm totally with you! I feel like so many times we get inspired to become more activist, but then whether due to a lack of direction or not having the energy or maybe feeling too normal, we get lulled back into complacency. But this week's headlines re. $187 million in donated funds being squandered by four cancer non-profits has me once again asking, what in the world can we do to stop this absurd lack of awareness or lack of urgency, and really be heard????

Myra1211

that got me going toDeanna! I am starting a writing campaign to female celebrities I know I can get to : Ellen, Oprah, Rosie, Meredith Viera. I need to get this off myself literally. I am starting a grass roots campaign, I will not let this end. Myra

MusicLover

Myra, Rosie's mom passed away from breast cancer, so did Madonna's, Bill Clinton's, Paul Cartney's and of course, he lost Linda also to this terrible disease.  Of course, Angelina Jolie lost her aunt to bc and her mom to ovarian (I think?).  I think that StandUp to Cancer is a good place to go to for support.  I believe a lot is being done, it is just a very difficult hurdle.  There is another thread on here which discuses the frustration, it's called "where's the outrage". Godspeed.

PS - One of the many things that has ticked me off about bc was one of the times I got emotional at my cancer center and I spoke to the social worker (who is very pleasant) and I probably said something like I wish I had gotten here sooner and she quickly said well, you don't know if you would have ended up as stage IV anyway.  OK, now of course, I knew that is a possibility for any cancer patient but it just seemed so shocking to me at the time.  I suppose that they know the statistics very well but in my head I was thinking "where is the outrage?' over that.

Myra1211

thank you Musiclover. I just found that thread. I am infuriated now. Women are portrayed as such incompetent, nincompoops. We must change this perception and show the world we mean business. I just saw an inane commercial for Publix where the mother, with child in tow, was so proud of herself for couponing...aarrrggghhh. Myra.

Romansma

I'm with you, 100%. If you are starting a writing campaign, let's do it in numbers. We need to organize. My brain is mush, so I need to be a worker bee on this, for now. I'm mad. I'm outraged! I NEED to do something to effect change. More money needs to flow from the pink machine to metastatic research. We need real breakthrough drugs NOW! I am sooooo tired of reading about new drugs with great progression free survival only to find out overall survival is 2 months! Come on! Enough! Extend our lives! There is soooo much money flowing in to breast cancer. Who is not aware of self exams and mammograms. Time to use the money to actually save lives!

Professor50

Count me in. If you have some email or snail mail addresses post or send them to me. I am over pink.

Myra1211

right after Memorial Day weekend we mobilize

Anonymous

I am glad to see this. I was the one who started getting people outraged in "Where Is The Outrage?". Then my hemoglobin levels went too low and I needed transfusions.

I noticed that my thread got more viewers when it was in the stage 4 forum. That leaves out other people, though. I really hope this new thread gets more attention.

Anyway, I feel a little better, so count me in!

MusicLover

Myra, Sounds great and Hope is correct great strides forward and then in reality not so much. 

sandilee

Definitely count me in. One of the things that people don't realize is how many young people are being diagnosed with BC every year, and how many under 60 are dying from it. People think of cancer as an "old people's disease," but so many women on our board have young kids and are in their 40s, or even younger.

I'm 64 myself, but I'd love to see some kind of campaign directed at younger women with metastatic BC. I think it would open people's eyes and make people see that, unlike many of the other cancers and diseases of old age, breast cancer strikes at all ages. And of course, if we can get the drugs produced that would enable the younger members see their kids graduate from college and have babies, it would help everyone, even us seniors.

glennie19

Sandilee:  I agree.  I was DX'ed at 54,, a more "typical" age, and it was not until I came here that I found out how MANY under 40's have been DX'ed with BC. Young women with young children.  I do not think the majority of the public is aware of this and if we are going to have "awareness" (that nasty word) on BC,, THIS is where it should be. Young women with BC,, young women with Stage IV,,, young women dying from MBC.  The word needs to get out there about this.  Insurance won't even pay for mammo's until you are over 40,, and how many women have I met on here who were diagnosed before they were old enough to have their first one???

 

Romansma

AND.....the mammogram may not have saved them from stage IV anyway! One of the biggest misconceptions the public has about this disease. Make those pink pushers show some evidence! There is none! From the info we get force fed, we have to believe that mammograms save lives. What would happen if everyone realized that you can still die of this disease even if you 'caught it early' and got all your mammograms on time? Would they demand more life saving research instead of all this early detection awareness. I think so.

sandilee

That's so true, Romansma. My cancer was small, no nodal involvement. Caught it early....NOT. It travels through the blood and can set up shop in the bone marrow and avoid detection, passing by the lymph nodes altogether. 30% of the women with stage I,II, or III will recur. And at this point, there's really no way to know who will or won't.

My oncologist's office is involved with a Genomic study that is working on a blood test that will be able to detect cancer in the bloodstream, the goal which is to be able to catch a recurrence long before it would show up on a scan. Almost all of the BC patients in his office, including myself, are in the study, anonymously donating blood for five months for the data they will be working from. I think there are five cancer centers participating, and it should be completed in a couple of years and I'm very interested in how it turns out, for the sake of those coming after us- our daughters. I do think that if they can discover and treat mets before they actually invade the bones or organs, a cure is much more likely.

3-16-2011

count me in. So much wisdom and passion on these boards. Lets see what this energy can do.

leggo

I'm all for activism, but I really do think approaching celebrities would be counter- productive. To serious an issue. JMHO.

wintersocks

Much the same misinformation in the UK, there is still the big push on prevention...

MusicLover

Myra, I think Leggo may be correct about the celebrities thing...I think if they wanted to get involved in this sort of thing they would have already.  That is why I suggested StandupToCancer since several celebrities are already involved in it and I think they may be able to help us organize something big.  It's just an idea. I think they can approach more celebrities or they can tell you if they have tried that already.  Maybe they will know where our efforts will make the most difference.  Or MBCN or Metavivor are other places we could ask about this.  Metavivor may actually be the best place because it is specifically for stage IV breast cancer. http://www.metavivor.org/about-us/  Maybe someone on BCO already involved in one of these organizations can post with their opinion.

Myra1211

Great ideas gals! Keep em coming, when the weekend is over, we are hitting the ground running. I want to make a difference! Myra

dlb823

What is the most important goal? Changing the misconceptions that bc is pink and that catching it early ensures a cure? Or getting those with funds -- which certainly isn't the government these days -- to allocate more money to mbc research -- or something else??? I think we need a mission statement to help us understand what the goal and message should be.

Anonymous

40,000 Americans die every year of MBC. This number has not changed in 2 decades.

30% of early stage breast cancers develop into MBC.

30% of research funds should go to MBC research, not 2%.

We need more funding for applied research! It may not benefit us today, but it may save the generation after us. Sorry to say, if you have MBC today, you are fighting a battle that you will lose.

LindaE54

Celebrity couple going through BC - Rita Wilson/Tom Hanks.  Although not stage 4, it would be good to have a celebrity state what Adnerb wrote above.

Linda

Moderators

Hey All,

We aren't sure you are aware, but a number of organizations have come together to for the Metastatic Breast Cancer Alliance. We have working groups, and are trying to do what you are suggesting - namely working together to do more!

It would be fabulous to have you take a look at the summary, goals, members, etc. and then let's talk! Metastatic Breast Cancer Alliance

We at BCO are working on a summary (next week it will hopefully be completed) of what we hope to accomplish on this front. Then as an Alliance, we too are getting some real and hopefully visible projects together as well.

Let's make this a place to work together!

We at BCO are soon adding new content for MBC and were for instance also hoping to gather more member stories around what you have found helpful (or not helpful), and any additional information that you would find helpful for someone new to the world of MBC. We always appreciate a photo, if you don't mind The stories are currently here, http://www.breastcancer.org/community/acknowledgin...

but hopefully soon much more visible on the site! Thanks for starting this topic!!!!

3-16-2011

Hi all

I am hoping to get this thread active again, I think if I were to set policy agenda for the world I would ask the pink ribbon army. aka Susan G Komen to do two radical things stop putting pink ribbons on items with known connections to breast cancer such as alcohol and to switch there funding from 38% education and 18% research to 18% education and38% research with a dedicated 30% of all reseach dollars focused on stage 4.

I dont know if anyone is asking but. this is what I would say.

leggo

Someone started a petition regarding research funds. Here's the link.

https://community.breastcancer.org/forum/110/topic...

I think it has quite a few signatures. Approaching Komen, or any other breast cancer charity is a waste of time and effort, IMHO.

Anonymous

Washington DC Die In

dunesleeper

What can we do? October is coming. I wonder what the Red Devils are doing? We may be able to join with them. Maybe we could create fliers about mbc and pink washing.

Anonymous

You can get to the site without going through facebook:

metup.org

MusicLover

Thank you for letting us know about this! I read your post earlier and I should have posted at that time, I hope others have seen this too. I want to really go through that website but I don't have the patience to read every page at this time but it looks interesting and it needs our attention. I also hope others will post their opinions on it here.

dunesleeper

I like the logo design and ordered the mug and a t-shirt. It would be great to grow this group so that more people listen to what we are saying.

katcar0001

I am not sure where to post this exactly:

The House revived legislation Wednesday to help increase funding for breast cancer research, one day after GOP leaders pulled it from consideration due to a fight over abortion.

The bill, which passed 421-9, would create a pink gold commemorative coin in 2018 and donate proceeds from the coin sales to the Breast Cancer Research Foundation. Rep. Mick Mulvaney (R-S.C.) voted "present," while all nine votes in opposition were from Republicans.

Originally, the measure would have funneled revenue from coin sales that goes beyond recovering the costs of production to both the Breast Cancer Research Foundation and Susan G. Komen for the Cure. But many Republicans balked on Tuesday due to concerns that the Komen organization has had ties to Planned Parenthood, resulting in GOP leaders abruptly removing the bill from the schedule.

The bipartisan bill, authored by Rep. Carolyn Maloney (D-N.Y.) and House Rules Committee Chairman Pete Sessions (R-Texas), had more than 300 cosponsors at the start of the day Tuesday. That number dwindled after Heritage Action, a powerful conservative group, urged Republicans to vote against it.

Heritage Action's influence over Republicans threatened the vote count under a fast-track process that requires a two-thirds majority for passage. The group rescinded its "key vote" against the bill once the provision directing funds to Susan G. Komen was removed on Wednesday.

The fight over abortion came as Republicans were denouncing an undercover video purportedly showing a Planned Parenthood official discussing the transfer of aborted fetus organs. House GOP leaders ordered committees on Wednesday to investigate the video.

Planned Parenthood has said the video "grossly mischaracterizes" fetal tissue donations.

Maloney said in an interview that she was "stunned" and "devastated" upon learning the bill would have to be pulled from the floor on Tuesday because of Heritage Action's opposition.

"I think it's very unfair, because they don't do abortions," Maloney said of the ire directed at the Susan G. Komen organization.

In addition to the $5 pink gold commemorative coins created by the bill, the U.S. Treasury would issue $1 silver and half-dollar coins recognizing breast cancer research.

Maloney touted the measure as a way to help raise up to millions of dollars for breast cancer research without using taxpayer funds.

"It's like a win-win-win. More research, more health care, no taxpayer money," Maloney said.

House GOP leaders turned the bill around quickly compared to other legislation they've had to pull from the floor this year. Just last week, the House canceled votes on an Interior Department spending bill due to controversy over the display of the Confederate flag in national cemeteries.

Bills regarding abortion, border security and No Child Left Behind reform have also been pulled from the House floor this year. House GOP leaders eventually resuscitated the abortion and education measures months later.

http://thehill.com/blogs/floor-action/house/248064-house-revives-breast-cancer-research-bill