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Old 09-20-2007, 06:14 PM   #1
Christine
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I'm Going To Washington DC

at he invitation of AdvaMed, who is hosting a conference for the Medical technology industry. I will be serving on a panel discussing the value, benefits and future of sophisticated technologies that enable breast health care such as the HER2 Serum (ELISA) test.

I need coments on this particular test and suggestions on other tests that you feel should be developed to benefit women with HER2 breast cancer.

The panel will convene on October 1st.

I am honored to be selected for this panel as a patient advocate representing your interests so your input is valuable.

Hugs
Christine
__________________
1990, July DX 1.1cm er-, pr-
Lumpectomy, 5U4, radiation
1999, June mets to chest and brain
HER2 3+++, er- pr-
AC, Taxol, Herceptin, Gamma Knife (3 treatments) WBR
NED July 2001
December 2001 - Founded HER2 Support Group
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Old 09-20-2007, 09:58 PM   #2
tousled1
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Christine,

My oncologist has been giving me the HER2 Serum test every 12 weeks since it was FDA approved for advanced breast cancer. My tumor marker tests were never reliable. At dignosis of Stage IIIc my tumor marker was 15.3. It went as high as 30.1 during A/C treatment and then dropped back down to 15.1 where it is has has been since.

I feel that if it weren't for the HER2 Serum test I still would not know that I had lung mets. My baseline before starting Herceptin was 10.1. While on Herceptin it gradually decreased until it got to 6.3 where it stayed. Late June of this year when I had the HER2 serum test done it was up to9.5. My oncologist wasn't concerned since it was still below the normal of 15. I told her I didn't like that it went up so quick after stopping Herceptin (end of April). I was due for my annual brain MRI and she also ordered a CT of the chest, abdomen, and pelvis. Low and behold we found lung mets -- numberous nodules in both lungs but none larger than 1cm. Also found a 5mm brain nodule. If it weren't for the HER2 serum test my mets would have gone undected until such time as I developed symptoms.
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 09-21-2007, 05:38 AM   #3
Believe51
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Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
Posts: 2,999
Wink Oh My Dear Dear Christine

Have I told you lately how much I appreciate all that you both do to help advocate for breast cancer?? Not only on your plight to conquer this disease for your own journey, but the gentle means you take to conquer it all for others. You happen to be one of my favorite heros Christine, you are an Angel in your own right. Each day that I come here for support or laughter I take a moment to cherish you. Without your passion to help others on this journey, we would not be here at all.

I do not have a response for your question. The only advocacy I deem important enough to fix right now is the Male Breast Cancer Statistics. Wherever I look they are WRONG!! Maybe at some seminar some other time you could talk to people of importance to update their numbers. After all, awareness is the key and these numbers are starting to be off by over 630 men. May not sound like a large number of men but in that WRONG number is my husband!! Again, I just want these agencies of importance to update the numbers yearly, it is 2007, not 1994!!

Sorry for the ranting just my passion coming out Darling!! LOL! I hope you have a great time. Go Get 'em For Us Christine!! Sending Love, Prayers and Positive Energy!!>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 09-21-2007, 07:27 AM   #4
Becky
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Three cheers for you (and us) that you were chosen for this! We are so lucky.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 09-21-2007, 08:48 AM   #5
Jean
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Christine,
Thank you for the endless gifts you give to us.

Hugs,
Jean
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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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Old 09-21-2007, 09:17 AM   #6
DonnaD
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Christine,
We are so proud of you! Thank you for another example of how you support us. I am so thankful for this site.
THANK YOU
Donna
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Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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Old 09-21-2007, 11:59 AM   #7
Julie2
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Hi Christine,

I monitored my Her2 serum since I was first put on Herceptin. And it was always in the range of 6 to 8 but just before my last cycle and just after stopping Herceptin it jumped from 10.1 to 13.5 and by the time I got my scans it was 21.4. I am currently on Navelbine and Herceptin for my recurrence to chest nodes and monitoring the effectiveness of the treatment with serum test. Hope this helps.

Thanks,
Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 09-21-2007, 12:55 PM   #8
StephN
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New blood tests

Dear Christine -
Being treated at a university/research facility I know a number of new tests are in recearch and development.

I have used the HER2 serum test and my med onc believes that it is a valuable tool for many of us with aggressive disease profiles.

Keratin 19 is another blood component that is being researched as a test for breast cancer (University of Washington Hematology). I have been participating in this research here for several years. I think a preliminary result was presented at ASCO this year.

You can add this one to the recommendations.
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"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 09-21-2007, 01:39 PM   #9
Chelee
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I can't help myself...I have to ECHO what Becky said. Yeah for you...and we are so lucky that you were choosen for this. At least we know they are only inviting the best of the best! I'm so glad your going to be attending...thank you so much.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 09-21-2007, 04:54 PM   #10
Patb
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Christine
I have nothing to add because I do not know enough, but am learning
from everyone here. I am go glad you are going and thank you and Joe
for keeping all the information coming. I do think my Dr. thinks I want his job because I know much much more now!!!!
patb
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patb

Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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Old 09-21-2007, 09:40 PM   #11
sherri
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You are our first lady and the best one.
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