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Old 04-17-2008, 01:59 PM   #1
mts
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Hi Jean-

I serve on a breast research panel that is sponsored by the US Congress. Every year, we review numerous breast cancer research proposals from all over the world (yes, the world !) and along with the 15 scientists that sit on the panel- try to figure out which proposals are the ones based on sound scientific merit and whether they should be considered for research funding. These scientists, while reviewing a proposal, will cumulatively provide their take on the proposal and very effectivley assess whether the proposal is viable with the suggested outcome the proposer provides. If the steps in research do not jive, they recommend changes to the proposal so that whoever proposed it can revamp and apply again... and again... Please know that if I were told that tying my boobs in a knot behind my head would be a cure I would vote to fund that ! But based off scientific merit, that concept like many proposals unfortunately just don't cut it. These people are not doctors. They are PhD's in nuclear physics, endocrinology, mechanical physics--- these are the people that teach our own doc's and onc's how to treat us. When they all sit in one room, you can palpate their desperation in trying to find a cure. I have no doubt that these people are trying their best. These are the people that in the end say where research funds go. And beleive me when I say that it is really sad when there is 220M in research available just for this group and only 10M is given out because most proposals are not based on sound research.
I firmly believe that its not the lack of funding, but the lack of more scientists ! A lot of these people end up being private practitioners and for those very few who stay in research- they specialize in the aspects of one molecule. Because a molecule is in a world of its own- research can be spent for decades researching just one !! Just look at the research done on estrogen alone... we now have tamoxifen- herceptin- arimidex- And all those drugs were based on estrogen metabolism.
The incremental, next obvious steps in breast cancer research are funded. Its the leap-frog, most "out there" types that we need more of. And those types are the ones we work on.
I am proud to say that the USA provided more bc research funding than any other nation. And if you sat on one of these panels, you would see another side of the breast cancer that's rarely seen.
Any bc patient can serve as a consumer reviewer on these panels. I have pasted info on the Congressionally Directed Breast Research Panels below as well as a review of the program itself. I would encourage anyone to participate and see first hand how breast cancer research is funded. These funds are appropriated by Congress and managed by the Dept of Defense. So, some of those dollars we see going to defense, are actually also going to bc research !!! Why do they go to the Dept of Defense? Well, because they have setup a mechanism to get the dollars out there for the leap-frog research. For the proposals that don't make it to the DOD, they apply to the NIH where the incremental, obvious next research steps are funded. I know I am not the know all of bc research, but maybe my experience can help explain a small bit of how our gov't does provide funding.
As a parting thought- As I sat eating dinner with my fellow panelists, I asked them how many true scientists working on breast cancer there were in the world... their answer was: "enough to fill up this restaurant".
We were eating in a restaurant with max seating of 75.

Maria

http://www.nap.edu/openbook.php?isbn=0309057809

http://cdmrp.army.mil/cwg/why.htm
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Old 04-17-2008, 02:27 PM   #2
Joe
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Maria,
You have beaten me to the punch. I have received many open invitations to serve on patient advocacy panels or to attend cancer research meetings.

Shortly I will be adding a new message board where we will be listing these opportunities. I highly recommend anyone who is interested to apply.

You forgot to mention that most of the reviewers are not only well compensated for their participation, but in most cases travel and lodging is also paid for.

We must all keep in mind that we are all advocates wether we participate in these venues or in clinical trials. All of the progress that we have made in breast cancer is based on the work of others who were before us.

Although each of us may only have a small voice, our voices are cumulative. Let the choir sing to the heavens in high.

Regards L&L
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Old 04-17-2008, 02:45 PM   #3
Jeanette
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Jean, I too have to pause on this one. Having two family members fighting this war at the moment I have mixed feelings. I agree there should be more funding for research though.
Proud wife of USN retired and 3 sons 1 daughter USMC
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Old 04-17-2008, 02:59 PM   #4
StephN
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Wink Great Post!

Thanks a whole heap, Maria!

Everyone should take note of most of what she says.
The booth for the US Army Medical Research programs was just down from ours at the conference this week. They were looking for people to be reviewers and were expecially excited to see a support group such as ours.
They have 150 million to spend on breast cancer ALONE. There was a chart whith the various cancers and the amounts allocated as part of their booth. Breast cancer was at the top with the most money. (Don't know which slice of the pie chart this funding comes from, but it is substantial.)

They had a signup sheet for anyone who wants to be contacted about being a reviewer. As Joe says they pay for your travel, lodging as well as your time AT HOME studying the material to be discussed in the larger group. If it was not so far away and I had the time, I would have given them my name. They want people who are NOT scientists as well as scientists so they have a more balanced input.

Maria - I really hope you will consider going to the AACR (American Association of Cancer Researchers) annual meeting in Denver next year. There were roughly 15,000 participants. Twice the number of the San Antonio Breast Cancer symposium, which are mostly treatment team types.

I know, they are working on ALL cancers, but many ideas are crossing over and there is collaboration on searches for effective targets.
We met far more than 75 BC researchers just in our little corner of the exhibit hall. There were at least 3 times more exhibits than at San Antonio, for instance.

We met everyone from full professors to graduate students working on breast cancer in some capacity. They all seemed quite serious about their work. New molecular targets is the big focus, and some of this is bound to mean great things for our disease.
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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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