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Old 08-02-2006, 11:22 AM   #1
mts
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Talking Going to D.C. as consumer reviewer for b.c.

Hi All,

Well, I have my plane tix and am going to DC to serve as a consumer reviewer for Breast Cancer research. I will have "my hand" in helping designate nearly $26M of federal funds... I must admit, its more the information I will gain than the money going out that interests me.
I have been reviewing/scoring proposals from major cancer centers/universities from the USA and abroad for funding in physical imaging research.
I had to agree that I would not be specific about what the research is about due to the highly secure nature of the studies and competitiveness amongst the applicants. I will say however that there are many experienced and highly knowledgeable people out there with the most extreme desire to find a cure for breast cancer.
Most of the research will be complete in 2 to 3 years, yet it is possible that many findings will be released prior to the end of research dates. I will keep my fingers crossed -what I have been reading has really encouraged me.

Thank you Christine and Joe for allowing Her2support.org sponsor me. Although I am not allowed to hand anything out, I am free to speak about our website. I hope your ears burn all next week!

Maria (MTS)
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Old 08-03-2006, 10:30 AM   #2
StephN
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Don't keep secrets!

Dear Maria -
What wonderful news!
I know this possibility exists and was interested in it myself after having found out about it in San Antonio. However, my brain mets, etc. have kept me from getting to step one on it.
My question on whether I would qualify centered on whether I would have enough understanding of technical jargon to fairly rate these research funding requests.
The more we learn about this disease, the more complex we find our bodies and how each person may go through the disease process. Which way to go with the research? I imagine the later stage studies that build on solid research may get the money.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 08-03-2006, 11:49 AM   #3
mts
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Hello Steph-
Actually, there are 15 scientist reviewers along with three "schmo's" like me. Us three schmo's are bc survivors (the only required attribute to become a consumer reviewer). The scientists' score the proposals based on "good science". I score them based on the cancer patient perspective and innovation. In the end, all scores are added... so I am thrilled that my opinion really matters. Although the proposals are highly scientific, they do at least provide a "public abstract" for the lay-people. Interestingly though, I really understand more of that technical stuff than I thought possible with my chemo brain...
Fortunately for me, most of the proposals had similar components to their plans. As though all research is on one tangent...
I would encourage anyone that participates on this website to try to get into this program. The Dept of Defense pays for all expenses to DC as well as Hotel. I certainly plan to go again next year!

Maria (MTS)
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Old 08-03-2006, 01:33 PM   #4
MCS
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Smile

Thank you Maria. Let them know everything you can


MCS ( maria)
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