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04-16-2008, 06:01 PM
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#1
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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What do you think?
Well, tax season is over....(ugh) are you a little curious where our tax dollars are going? I was...and I was not very happy that 29 Billion
dollars is budgeted for Health care. While a whopping 189 Billion is the budget for the war in Iraq. To make things a bit more bitter, 500 Billion
is budgeted for Defense. The dept. of health has also had to take a 2% budget cut. We are currently spending 4 times the amount on war compared to finding a cure for cancer/and/other life threatening disease.
I am writing my Congressman.
Regards,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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04-16-2008, 08:08 PM
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#2
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Jean, you know I love you, so I'm going to pause a little on this one. I understand exactly what you are saying, but your post is kinda like poking a flaming stick into a hole in the side of a hill and waiting to see what flies out.
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04-16-2008, 08:10 PM
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#3
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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Joan when you fisinsh your letter ..if is OK give a copy ..I change the name of my congressman and send it to him too ...???????????????????????????????
__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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04-16-2008, 08:26 PM
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#4
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Bill,
I truly in my heart believe that by informing the men in Congress whose job it is to represent us....should know that we want and have a right to expect our tax dollars to be spent for the good of our communities. 29 Billion towards health care with a 2% cut to that dept is not acceptable. We spend more money on bullets than medicine/and/research...shame on them....
And Bill, - I love you still I always will..hmmmm can you hear me singing?
hehe....
hugs,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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04-16-2008, 11:18 PM
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#5
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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I think the reflection of our govt's priorities shown in the billions spent on the Iraq. Our dependence on oil is finally really starting to hit home. I am hoping to see major changes in the near future and looking forward to the upcoming election.
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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04-17-2008, 09:10 AM
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#6
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Senior Member
Join Date: Oct 2005
Posts: 823
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Jean I like Bill will take a pause on this.
Signed --A Proud Army Wife.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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04-17-2008, 01:59 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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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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04-17-2008, 02:27 PM
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#8
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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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
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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04-17-2008, 02:45 PM
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#9
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Senior Member
Join Date: Oct 2005
Posts: 215
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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
Jeanette
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04-17-2008, 02:59 PM
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#10
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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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.
__________________
"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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04-17-2008, 03:16 PM
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#11
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Thanks to all for sharing what they know! Even though the "little grey cells" don't work as well as before, they surely do leap and rejoice when they get good input! And I love all the different input! Thanks again! ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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04-17-2008, 03:21 PM
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#12
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Senior Member
Join Date: Apr 2008
Location: NY
Posts: 240
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This is a wonderful discussion for a newbie like me! I believe that money alone won't lead us to the cure - but the minds and hearts of young scientists. Science education is so important - while we ask for more funding to be applied to BC research, more money needs to be spent on public education in the sciences.
__________________
xxoo
Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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04-17-2008, 04:31 PM
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#13
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Senior Member
Join Date: Jan 2008
Posts: 154
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I have often wondered why a guy like Bill Gates, who gives away millions and millions of dollars, doesn't do something similar that was done during WWII.
He could build a technology park, assemble scientists and researchers from around the globe to work together on finding a cure for cancer. He could even offer them a large chunk of money, say for instance 1 million dollars for the first person or team that finds the magic cure.
With his wealth, it would only take a small percentage of his money to do this, and he could still donate to the other projects that he believes in. He also has the power and influence to bring more rich people in with him.
Finding a cure for cancer would make him way more famous 200 years from now than founding Microsoft will.
__________________
Diagnosis and Treatment: DX 12/07/07
Male Diagnosed with DCIS at age 39
Mastectomy on right breast
Tumor Stage pt1b NO MO
DCIS Tumor size 1.5 x 1.x .6cm
Infiltration tumor size .25X.17 cm
Bloom-Richardson Grade 3(score 8)
Nuclear Grade 3 with comedo necrosis
Estrogen+/Progestrone+/HER-2/Neu +++
FISH ratio 4.31
Lymph node removal scheduled 1/07/08
17 nodes tested and all negative 1/08/08
Started Tamoxifin 1/29/08
Oncotype DX score 52 (off the charts, according to my onc!!!)
Starting TCH 3/14/08
BRCA I Positive BRCA II Negative
Finished TC 6/27/08 continue Herceptin
8/1/08 Herceptin stopped due to low Muga score
Mastectomy on left breast 11/10/08
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04-17-2008, 08:32 PM
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#14
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Senior Member
Join Date: Oct 2005
Posts: 215
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What do you think
I agree, Bill Gates could donate, so could Warren Buffett and Oprah. There are so many wealthy people in the world that could finance this project. Oh know they all donate to different projects, but wouldn't it be nice if the big " C" could be cured. Hoping for a miracle, Hugs and blessings to you all. Jeanette
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04-17-2008, 08:40 PM
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#15
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Doug, that's an awesome idea! "If you can conceive it, you can achieve it"
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04-17-2008, 10:58 PM
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#16
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Maria,
Thank you for the education. I understand that much is being done.
I am just frustrated and when hearing the health care budget dollar amounts, I felt we should have more in the budget. It is evident from your informative post that much is being addressed and certainly the
research that comes before the panel must be worthy to receive funding.
Jeanette, I too have a family member ( my cousin's son) who is a Marine Lt. serving his second tour in Iraq. I support our troops and Thank God we have these brave men and women.
But I would be lying if I said I feel correct with the money being spent on
the war. But that is an entire other issue and my post was directd at
having more dollars for health care.
Hopefully in the near future I will be able to devote time to these wonderful and excitng panels.
Kind Regards,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
Last edited by Jean; 04-17-2008 at 11:00 PM..
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04-18-2008, 05:46 AM
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#17
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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Hi
It truly is frustrating.
After the last review I attended, the group passed around a microphone to allow all participants a comment regarding their review experience. I realized at that moment, that if the particular scientistss in that room all got together-
I mean, take the funding and move all these folks and their families to one breast research facility and let them all together work on the highest scored proposal --- they would come up with a leap frog, highly innovative outcome. Obviously these people are bright enough to pick apart other researchers proposals and amongst themselves arrive at ways to get answers... This would certainly cost less than a few of funded proposals !!!
In my humble opinion, many of the breast research facilities (overwhelmingly universities with teaching hospitals) have a stake in the process. The grants provide not only the financial means to support a bc research program, but also pay for infrastrucutre, staff salaries, computers, high-tech equipment, refrigerators, even the breeding of mice for research !
I really would love more of us to join these panels. They are soooo interesting and educational !!! The Komen people attend in droves ( I think it helps them see where research is going so they can 'pick-up' a few contacts for their giving.)
I was graciously provided a letter from Joe and Christine as my "support group sponsors" a few years back. Panelists are paid- betweem $750- $1200 for the 'service' we provide, plus airfare and hotel, meals... and the mileage to the airport as well. They even paid for two extra nights for me because I did not want to drive to Orlando from my rural town in the dark. Another time my hubby went with me and we made a little time for ourselves (it did not pay for his airfare, but the hotel room was covered). They send you nearly 60 proposals via email or cd; you read and score your 12 and familiarize yourself with the rest. This portion takes around 3-4 weeks and then they fly you to DC for 3 days.
I have seen the same faces there for the last 3 years... it sure would be nice if there were new ones ! JOIN !!!!
Maria
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04-18-2008, 06:26 AM
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#18
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Senior Member
Join Date: Apr 2007
Location: Mississippi
Posts: 600
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I would love to participate in these programs. I found the link to one of them and I am going to look into it. I miss being in research and am hoping to get back into it but right now I would like to feel that I am making a difference in some way. Joe, I am looking forward to the information you are going to post.
Leslie
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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04-18-2008, 08:01 AM
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#19
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Maria,
Could you tell me how often do you meet with the panels?
Usually how long are the meetings?
Your information is encouraging.
Thank you,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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04-18-2008, 08:37 AM
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#20
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Am I getting this right? Is Maria saying that the dollars are there but that the proposals are not "sound" and
therefore not being funded?
Does this mean that all of the propellerheads of the world
need to be united and able to share ideas in order to get
"sound" proposals which would be funded because the money
is sitting there waiting for some good ideas ????
Jean, I know you meant no disrespect for your military.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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