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-   -   Giving Up Hope - are you with us? (https://her2support.org/vbulletin/showthread.php?t=46802)

Debbie L. 09-21-2010 08:43 AM

Giving Up Hope - are you with us?
 
NBCC has launched a bold initiative. I am eager to hear more about the steps we can take to make this happen, but the first step is to get the word out. This link is to one page, but if you use the tabs above the main window, you can get more information, including a well-written whitepaper with more information. In the "hear what the experts say" page, Denny Slamon is featured, along with Susan Love and Kim Lyerly. Be sure to go to the voting page "choose a side" and cast your vote. As one of the first comments says "why would anyone vote no?".

http://www.stopbreastcancer.org/2020...-deadline.html

Debbie Laxague
(PS: if your JW player (whatever that is) is not up to date, you might have trouble viewing the videos. Click on the JW player icon that pops up in the bottom left of the video window and you can update it quickly and easily)

joletta 09-21-2010 08:56 AM

Re: Giving Up Hope - are you with us?
 
Hi,
i almost did not read your post because of the headline..Hope more people will read. it is inspirational..your diagnosis is similiar to mine. Glad to read that.
Many years of happy healthy life to you. Thanks for posting in.
Joletta

Laurel 09-21-2010 05:47 PM

Re: Giving Up Hope - are you with us?
 
Hey! What a wonderful idea! I always perform better with a deadline....

Chelee 09-22-2010 03:46 AM

Re: Giving Up Hope - are you with us?
 
I deleted my thoughts on this because they weren't very positive. (Sorry...just feeling a bit down tonight.) It's not the same thing...but it's close to what President Nixon did 40 yrs ago. But if setting a deadline helps in anyway I'm all for it.

Thanks for sharing this Debbie.

Chelee

Hopeful 09-22-2010 07:20 AM

Re: Giving Up Hope - are you with us?
 
Interesting concept. Excerpts that struck me from the white paper:

"As we learn more about breast cancer subtypes, evidence grows that many drugs benefit a small group of women, yet they are given to all. Chemotherapy drugs are often added to treatment regimens without a great deal of evidence of benefit. When longer-term evidence indicates benefit is limited and harm exists, existing treatments are rarely removed from regimens, regardless of the strength of evidence against their use. For example, many women diagnosed with invasive breast cancer of different subtypes continue to receive anthracyclines, though evidence shows that the drugs may only provide incremental benefit to a small group of patients, and could be replaced with a less toxic substitute."

"Breast cancer research over the decades has produced elegant science and thousands of research papers, but little that has had a big impact on patients or those at risk. It is possible for researchers to gain significant acclaim for their work, and to be judged highly successful by the scientific world's measurement, without having helped a single patient. The system rewards safe ideas and discourages innovative ones that might lead to the big breakthroughs in prevention and treatment. The infrastructure of breast cancer research is to keep things moving along as they have been and to reward people for doing safe, low-impact work. These obstacles are not scientific challenges but rather organizational and systemic dysfunctions. These are problems with solutions."

Hopeful

v-ness 09-22-2010 05:48 PM

Re: Giving Up Hope - are you with us?
 
it made me cry.

it's on my FB page now with that attention-getting title. thank you for posting. valerie

swimangel72 09-22-2010 08:37 PM

Re: Giving Up Hope - are you with us?
 
Great idea - thanks for posting it Debbie!

tricia keegan 09-24-2010 03:12 PM

Re: Giving Up Hope - are you with us?
 
Thanks, I also just posted it on my FB page!

AlaskaAngel 09-28-2010 09:55 AM

Re: Giving Up Hope - are you with us?
 
Hi, just adding my usual 10 cents here:

http://her2support.org/vbulletin/sho...d=1#post236356


P.S.

Explicit limitation of the purpose and application of the NCCN guidelines:

"The NCCN Guidelines are used by doctors in academic centers and community practices to inform their decisions when diagnosing and treating cancer."


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