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phil · 11-28-2012, 12:39 PM

I will try to get that for you . basically , we need natl media attention. Starts w/ local media stories. direct them to our website, http://stageivsurvivor.webs.com . Thanks, Paula , for your understanding and encouragement.
I get real testy about T DM-1. To see NBCC speaking up about future trial design when it isnt EVEN APPROVED FOR STAGE IV NOW, ticks me off. Honestly, I consider This FDAs' bungling of it one of the greatest tragedies in the history of the War On Cancer so far, costs many lives every month that appr. is denied . And NBCC's blind FDA support only helps This Slow FDA slow down even more. . So, I called , sent e-mails to "The Big Three " bc advocacy groups over a yr ago. Only Komen responded then , and talked a lot , did nothing. They did give lukewarm , written support to the Avastin super-responders . I called . e-mailed NBCC several times - no answer. After all, I'm a nobody , not Bill Clinton ! I was at the FDA Avastin hearing when Christine Drucker from NBCC shocked the Avastin Survivors by testifying against them. ran into a NBCC Boston area rep last month, polite talk , but , of course , no acknowledgement of a pro - FDA bias . Talk of ' stopping overuse of bone marrow transplants ", back 10 + yrs ago . What does that have to do w helping stage iv get T DM-1 now ? NBCC did great work w/ original herc in 96, but the operative word is " DID " . Right now their top leadership is way off base w This FDA , no understanding of stage iv needs , and rights. I'm on my second attempt to get in touch w/ ACS New England, met a senior official at a bc walk in Oct. so far no response .
Ok , I'm done , on this thread , because I love it when stageiv fighters get together , support each other , you are my " Wounded Warriors ". Have a great Symposium , if u get to wear our shirts we will be honored . God Bless and Heal.

11-28-2012, 12:39 PM	#33
phil Senior Member Join Date: Nov 2010 Posts: 393	Re: Meeting Up in San Antonio NEXT WEEK! I will try to get that for you . basically , we need natl media attention. Starts w/ local media stories. direct them to our website, http://stageivsurvivor.webs.com . Thanks, Paula , for your understanding and encouragement. I get real testy about T DM-1. To see NBCC speaking up about future trial design when it isnt EVEN APPROVED FOR STAGE IV NOW, ticks me off. Honestly, I consider This FDAs' bungling of it one of the greatest tragedies in the history of the War On Cancer so far, costs many lives every month that appr. is denied . And NBCC's blind FDA support only helps This Slow FDA slow down even more. . So, I called , sent e-mails to "The Big Three " bc advocacy groups over a yr ago. Only Komen responded then , and talked a lot , did nothing. They did give lukewarm , written support to the Avastin super-responders . I called . e-mailed NBCC several times - no answer. After all, I'm a nobody , not Bill Clinton ! I was at the FDA Avastin hearing when Christine Drucker from NBCC shocked the Avastin Survivors by testifying against them. ran into a NBCC Boston area rep last month, polite talk , but , of course , no acknowledgement of a pro - FDA bias . Talk of ' stopping overuse of bone marrow transplants ", back 10 + yrs ago . What does that have to do w helping stage iv get T DM-1 now ? NBCC did great work w/ original herc in 96, but the operative word is " DID " . Right now their top leadership is way off base w This FDA , no understanding of stage iv needs , and rights. I'm on my second attempt to get in touch w/ ACS New England, met a senior official at a bc walk in Oct. so far no response . Ok , I'm done , on this thread , because I love it when stageiv fighters get together , support each other , you are my " Wounded Warriors ". Have a great Symposium , if u get to wear our shirts we will be honored . God Bless and Heal.