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Old 03-31-2010, 08:06 AM   #1
Margerie
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Smile Congressionally Directed Medical Research Panel in need of breast cancer survivors

/advocates for this summer's upcoming breast cancer research panels. Someone on this board posted about this program and I decided to take the plunge and participate last year. It was by far the best breast cancer related experience for me. So full of hope, actually evaluating research proposals from the perspective of a breast cancer survivor. They need more participants, especially for an upcoming May panel. If you are interested, please check out the website:

http://cdmrp.army.mil/cwg/default.htm

The basics: ~two weeks of work at home, you are paid a stipend, expenses paid for flight, hotel and meals for a 3 day session in DC.

If anyone would like more info or a short cut to the paperwork, please pm me your email address. You need to be nominated by a breast cancer group/organization. (I am sure Joe and Christine could help )

Margerie
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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

Last edited by Margerie; 03-31-2010 at 09:02 AM..
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Old 03-31-2010, 08:52 AM   #2
Joe
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Re: Congressionally Directed Medical Research Panel in need of breast cancer survivor

Yes, We would write a letter to nominate anyone from our group.

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Old 04-01-2010, 04:26 PM   #3
Audrey
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Re: Congressionally Directed Medical Research Panel in need of breast cancer survivor

Thanks for sharing this--I'm intrigued and will look into it!
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diagnosed July 2001, at age 36
large tumor, 11+ nodes
Stage IIIb, er/pr-, Her2+
treated with A/C, weekly Taxol
radiation, + year of Herceptin
on clinical trial. double mastectomy
followed by reconstruction
NED!!
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Old 04-05-2010, 06:47 PM   #4
mts
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Re: Congressionally Directed Medical Research Panel in need of breast cancer survivor

I am moving this one up so more have a chance at considering this invaluable opportunity. I have been a consumer reviewer for nearly 4 years and am amazed each time at the advances coming down the pike.
Us consumers really do have a say in the way funding is spent on breast cancer. Besides, you learn about which cancer centers are on the 'cutting edge' in technological advances and therapies.
You are paid $750 for nearly 2 weeks of reviews (usually around 15 proposals) over your computer and then 2 days of hands-on work in DC.


MTS
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--------------
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 04-21-2010, 10:45 PM   #5
hutchibk
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Re: Congressionally Directed Medical Research Panel in need of breast cancer survivor

I put this on the back burner over a year ago when I had to change up treatment, but now I really want to do it... Joe, can you nominate me and write a letter again?

Thanks!
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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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