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Old 10-16-2008, 11:04 AM   #1
mts
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WANTED: Consumer Reviewers for Research Funding

Hi All-

Every year I try to recruit Consumer Reviewers for the Dept of Defense, CDMRP (Congressionally Directed Medical Research Program)

This is OUR chance to actually help decide where and who receives federal funding for breast cancer research !!! I know many of us doubt the funding availability provided by the US government --- but this is an area where you can see exactly how bc research funding works and likely convince you that the money is there for the innovative research facilities.

Its a tremendous opportunity to meet some of the most gifted bc scientists and survivors in a forum that scores and ranks research proposals from around the world and the USA of course. If anything- its also a way to see and hear the latest in research that has yet to hit the public eye.

I have served for three years and every year I go, "other" breast cancer organizations show up in higher numbers... HER2's need to be there to represent the rest of us.

Please go to http://cdmrp.army.mil/cwg/default.htm
and click on how to apply. Its sooo easy and as a bonus-you get paid to do this and all transportation costs as well. Meetings are held in DC.

Maria
__________________
--------------
Dx'd 8/04 at 41
Stage 1 for some onc's; Stage II for others (if you add up the sizes of all tumors).
Infiltrating DCIS
HER2+, ER+10% & PR-
.9cm tumor not visible on mammo, but palpable; visible on ultrasound
Lumpectomy/ clear margins, no nodes
Had Breast MRI after lumpectomy that revealed two more tumors in same quadrant(.4cm and 1.6cm) that were not visible on either mammo or ultrasound.
Re-excision
DD AC+T; Herceptin one year
Rads
NED/Taking Tamoxifen reluctantly
--------------
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Old 10-16-2008, 03:00 PM   #2
hutchibk
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Oops, I have my paperwork and letter, but I need to get off my butt and put it in the mail! Thanks for reminding me, Maria! Love ya!
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 10-16-2008, 04:11 PM   #3
R.B.
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Thanks MTS

I wonder if they would consider a Brit (-:.

Worth a try - sounds fascinating.


RB
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Old 10-16-2008, 08:02 PM   #4
Soccermom
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I have an application Maria, but am hesitant to take on another obligation right now...
I only wish I could do advocacy full time and ditch the $10.00 job an hour retail job with health insurance..
Sigh...Marcia
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Old 10-17-2008, 06:13 AM   #5
mts
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Come on ladies (and gents) ... sign up !

Marcia-

You can submit your app and when you get the call, you can tell them you can't for that time -but maybe for another time... at least your "in".
There are other ways to review as well--- I have completed one review from my computer at home (about 10 hours of work over the course of 2 weeks) and never had to go to DC. When I volunteered, I thought I was volunteering with no pay. I was truly surprised to get a $750 check in the mail !

I think the best part "bonus" is the invitation to the Era of Hope meeting -which takes place every 2 years-where all the funded research projects provide their results to date. A true source of hope for a cure. And you have a hand in it !

I hope more of us show an interest. My second year of advocacy was the first year that HER2 was the main focus of research (at least in the group I sat in).

Brenda: You can pretty much pick and choose which panel you sit on. Knowing this will better help you pick the most convenient time to serve...

Maria
__________________
--------------
Dx'd 8/04 at 41
Stage 1 for some onc's; Stage II for others (if you add up the sizes of all tumors).
Infiltrating DCIS
HER2+, ER+10% & PR-
.9cm tumor not visible on mammo, but palpable; visible on ultrasound
Lumpectomy/ clear margins, no nodes
Had Breast MRI after lumpectomy that revealed two more tumors in same quadrant(.4cm and 1.6cm) that were not visible on either mammo or ultrasound.
Re-excision
DD AC+T; Herceptin one year
Rads
NED/Taking Tamoxifen reluctantly
--------------
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Old 01-06-2009, 07:06 AM   #6
RobinP
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Thanks for the information, Maria. I've completed the application and will send it off. I would love to see HER2 get represented by the DOD. cancer research.
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Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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Old 01-06-2009, 12:44 PM   #7
Margerie
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Maria,

A few of my bc friends and I were just talking about how we need to study more about premenopausal bc. I think I will get this application in. Thanks for posting. Sounds like an incredible opportunity!
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Are we there yet?


Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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Old 01-06-2009, 02:30 PM   #8
Vic
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Hi Maria,

Great photo of you and your family and what a mountain! When is the DC conference held?

Thanks,

Vicki
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Diagnosed 12/03 at age 53
1.5cm tumor, ER-PR-, Her2 3+(rt side)
Stage 1B, Three negative nodes from Sentinel Node Biopsy
Paget's of the nipple, Infiltrating Ductal Carcinoma and DCIS of the rt breast
Bloom-Richardson score 8/9, P53+ 60-70%, Ki-67+ 30-40%
Skin-sparing mastectomy with immediate lat-flap reconstruction and saline implants, 1/04
Chemo: FAC, five sessions every three weeks Feb.-May 04, then switched to HTC weekly for 12 weeks, June-Aug 04
Zometa every 6 months for osteopenia, started April 09
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Old 01-07-2009, 01:31 PM   #9
mts
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The conference is really a 3 day sit in a room and go over proposals with 15 scientists and two other consumers like you. Of course, by then you have already reviewed 8 or so proposals assigned to you and you discuss your reasons to fund or not fund a proposal... You get to vote on yours as well as every other proposal presented.
The panels are held sometimes in January over the computer or in person ( I am going Jan 21). Also in the summer -- usually end of June/ July.
I just received an email from the program administrator and they are looking to recruit more bc survivors. Especially from minority groups.
PS- The photo of the mountain is of "El Morado" in the Chilean Andes -- during Thanksgiving.
If you submit now, you will likely "get in" by the next round of reviews.

Maria
__________________
--------------
Dx'd 8/04 at 41
Stage 1 for some onc's; Stage II for others (if you add up the sizes of all tumors).
Infiltrating DCIS
HER2+, ER+10% & PR-
.9cm tumor not visible on mammo, but palpable; visible on ultrasound
Lumpectomy/ clear margins, no nodes
Had Breast MRI after lumpectomy that revealed two more tumors in same quadrant(.4cm and 1.6cm) that were not visible on either mammo or ultrasound.
Re-excision
DD AC+T; Herceptin one year
Rads
NED/Taking Tamoxifen reluctantly
--------------
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