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Nancy L · 10-14-2012, 11:31 AM

Thank you for starting this thread again this year. Breast cancer awareness is not the elephant in the room. Metastasis is. You would have to be living under a rock to not know about breast cancer. What never gets much visibility is how many women (and men too) live with the disease, how many die each year and the number of lives that are affected.

This is why I support the Noreen Frasier Foundation. Noreen has metastatic BC. The foundation is focused on metastatic BC. I have seen her on TV twice talking about her work, once in a scarf and last night with a butch. She is on the chemo roller coaster. Last night she talked about a project with UCLA to find a drug to make metastatic BC a chronic disease like HIV. Her foundation gave $1M. She said a drug is in clinical trial and is showing promise but she didn't say the name of the drug or the pharma involved. I am going to see if I can find anything in NIH about this.

I would also like to raise visibility to an informative discussion last year on the state of metatastic research in case some of you missed it. Do a search on "metastatic breast cancer and Nancy Brinker". It was a very informative discussion. I tried to post to that tread to bring it to new posts but it didn't happen----guess it was flagged or too old. I admit to not understanding everything about this sites maintenance.

Until the funding model changes to focus on understanding and stopping metatasis, very little will really change. We need to move past awareness campaigns to supporting efforts to end this disease once and forever or at a minimum turn it into a chronic disease. Most people don't realize that ending many diseases like breast cancer is the only way health care costs will ever be controlled. I have read a three week treatment of TDM-1 will cost more than $5K. Each new drug is more expensive than the last and these costs are unsustainable.

I agree with Phil that that the FDA approval process needs to be reformed but I think the govt grants for BC research do too. If Romney wins, maybe we can write a letter to Ann with all our names and see if we can get an funding advocate in the white house. Yes, she was lucky to have only stage 0 breast cancer but I can tell from when she talks about it that it is still on her mind. We need a very visible high profile person to take on this cause, like a Michael Fox or Magic Johnson or Lance Armstrong. I have been waiting for a surviving spouse to take up the cause with passion but I am still waiting.

I will add the following information which I read today.

Metastatic Research Funding: government sources
Danny Welch, PhD, a researcher on metastasis at University of Kansas Cancer Center (previously at University of Alabama) says only a few hundred scientists in the world are trying to understand the process: “It’s responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget.” click here. see page 4. Quote is based on European studies and appeared originally in the Journal of European Cancer.
*
Metastatic Research Funding by Susan G. Komen Foundation
2012 ad campaign SGK states: “In just the past six years, over $35 million in funding has been awarded to help interrogate why cancer spreads, discover which genes can suppress tumor growth, develop therapeutics to target metastasis and find ways to help the immune system fight metastasis.*
Using the Komen Audited Financial reports MBCN calculated the total Public Support & Revenue raised for the same last 6 year period which totalled: $2,012,000,000 or about $2 Billlion dollars. 36 million for metastatic research as a % of the total revenue raised = 1.7% (round up to 2%) In other words, $200 goes to metastatic research for every $10,000 raised by SGK.

10-14-2012, 11:31 AM	#4
Nancy L Senior Member Join Date: Apr 2009 Location: La Quinta, Ca Posts: 253	Re: One Day in Pinktober Thank you for starting this thread again this year. Breast cancer awareness is not the elephant in the room. Metastasis is. You would have to be living under a rock to not know about breast cancer. What never gets much visibility is how many women (and men too) live with the disease, how many die each year and the number of lives that are affected. This is why I support the Noreen Frasier Foundation. Noreen has metastatic BC. The foundation is focused on metastatic BC. I have seen her on TV twice talking about her work, once in a scarf and last night with a butch. She is on the chemo roller coaster. Last night she talked about a project with UCLA to find a drug to make metastatic BC a chronic disease like HIV. Her foundation gave $1M. She said a drug is in clinical trial and is showing promise but she didn't say the name of the drug or the pharma involved. I am going to see if I can find anything in NIH about this. I would also like to raise visibility to an informative discussion last year on the state of metatastic research in case some of you missed it. Do a search on "metastatic breast cancer and Nancy Brinker". It was a very informative discussion. I tried to post to that tread to bring it to new posts but it didn't happen----guess it was flagged or too old. I admit to not understanding everything about this sites maintenance. Until the funding model changes to focus on understanding and stopping metatasis, very little will really change. We need to move past awareness campaigns to supporting efforts to end this disease once and forever or at a minimum turn it into a chronic disease. Most people don't realize that ending many diseases like breast cancer is the only way health care costs will ever be controlled. I have read a three week treatment of TDM-1 will cost more than $5K. Each new drug is more expensive than the last and these costs are unsustainable. I agree with Phil that that the FDA approval process needs to be reformed but I think the govt grants for BC research do too. If Romney wins, maybe we can write a letter to Ann with all our names and see if we can get an funding advocate in the white house. Yes, she was lucky to have only stage 0 breast cancer but I can tell from when she talks about it that it is still on her mind. We need a very visible high profile person to take on this cause, like a Michael Fox or Magic Johnson or Lance Armstrong. I have been waiting for a surviving spouse to take up the cause with passion but I am still waiting. I will add the following information which I read today. Metastatic Research Funding: government sources Danny Welch, PhD, a researcher on metastasis at University of Kansas Cancer Center (previously at University of Alabama) says only a few hundred scientists in the world are trying to understand the process: “It’s responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget.” click here. see page 4. Quote is based on European studies and appeared originally in the Journal of European Cancer. * Metastatic Research Funding by Susan G. Komen Foundation 2012 ad campaign SGK states: “In just the past six years, over $35 million in funding has been awarded to help interrogate why cancer spreads, discover which genes can suppress tumor growth, develop therapeutics to target metastasis and find ways to help the immune system fight metastasis.* Using the Komen Audited Financial reports MBCN calculated the total Public Support & Revenue raised for the same last 6 year period which totalled: $2,012,000,000 or about $2 Billlion dollars. 36 million for metastatic research as a % of the total revenue raised = 1.7% (round up to 2%) In other words, $200 goes to metastatic research for every $10,000 raised by SGK.