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Old 12-05-2007, 08:35 AM   #1
Emelie
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Red face First Serum Test Today

Hi everyone,
Thank you so much to everyone who took the time to listen and respond to my ailments! I truely don't know who I would tell about this stuff since we are so new to Denver. My poor husband is great, but I know he gets as tired of listening to me as I get of telling him.
I go in for my first 3 month check-up today and my onc wants to start Her2 serum testing. I am not sure how I feel about that?
As for my shoulder, the MRI confirmed it is a ligament problem, no mets, and I have an appt. on Fri. with an ortho guy. Still don't know what is up with the feet. X-rays were fine. Will ask onc. if she knows.
So here I go for my first check. I know all will go well, as I am so looking forward to having all 3 of my kids, and daughter in-law here for the holidays. Hopefully, I will be strong enough to hit the slopes!
Have a great day everyone,
Emelie
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Old 12-05-2007, 08:53 AM   #2
Joe
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Emelie,

The HER2/neu serum test is the only test specificly designed for women who are HER2 positive. It is a simple blood test and is designed to monitor your progress while being treated.

There is much information about this test on our Tests and Treatments page:
http://her2support.org/index.php?opt...d=42&Itemid=64

Regards
Joe
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Old 12-05-2007, 09:20 AM   #3
nitewind
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What is one to do when your oncologist says the test isn't needed? I'm almost finished with my year of herceptin (Friday,7th). If you're not tested, how can you know what's going on? Sometimes I feel like I'm in the dark a lot!
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Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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Old 12-05-2007, 11:25 AM   #4
Mary Anne in TX
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Makes ya want to ask the doc if he thinks the most recent study infor. is not valid!!!!! Why don't they let patients run the world??? Oh, well, maybe just a persistent "push" would do instead!
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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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Old 12-05-2007, 06:56 PM   #5
eric
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Joe

I never took the time to look thru the section you mention. Great stuff! Thank you. Caryn's Onc doesn't believe in the test but I will bring it up again as a way of qualifying her Her2 status since I've wondered about her status changing since she hasn't recently responded to Herceptin ot Tykerb.
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Old 12-05-2007, 08:48 PM   #6
tousled1
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Since I started Herceptin my oncologist has done the HER2 serum test every 12 weeks. Tumor marker tests have proved to be extremely unreliable for me where as the HER2 serum test is the indicator that told me something was going on -- I had developed mets. I'm not sure if they use it for early breast cancer but it is FDA approved for metastic cancer patients.
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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 12-05-2007, 09:51 PM   #7
Chelee
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Emelie, I am happy to here of your MRI results on the shoulder...that has to be a relief. I asked my onc about doing the Her2 serum test. I just got this blank look and then a "no, we don't do that".

I sure wish my onc would offer to run this test on me. Maybe since yours is bringing it up...soon they all will be. (wishful thinking on my part.) But you have to do what your comfortable with..we are all different. I want to use all tools that are available to be. I've heard from several women where the her2 serum test has been much more reilable then tumor markers as Kate said. I know it might be a bit stressful for you...but I would welcome it. Good luck regardless of what you decide.

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 12-06-2007, 05:29 AM   #8
dhealey
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My onc does nodt do the test either, but the family practicioner I work for (also treats me for thyroid and BP problem) ordered the test and my insurance paid for it. The doc I work for also ordered a PET scan since my onc wouldn't, insurance paid for that too. So I will be having these test done routinely, but ordered through the doc I work for. Sometimes you have to go around the system to take care of your health. Don't get me wrong I like my onc, she just doesn't believe in testing until symptoms appear. I think if you are her2 positive, these tests must be done routinely as our cancer is more aggressive. If caught early things can be kept in check. Doc I work for believes this also.
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Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 12-06-2007, 05:51 PM   #9
Cathya
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Debbie;

I totally agree with you. I pay for this test myself as it is not offered in Canada and I feel comforted by doing so.

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 12-07-2007, 06:06 PM   #10
Lolly
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Here's a link to a discussion on this site earlier this year, with Dr. Walt Carney, who helped develop the Her2 Serum Test. It's interesting, but want to point out that in one of his responses he says the Serum test is NOT used to indicate Her2 status. However, the test IS useful if one's tissue originally tested negative for Her2, as an elevated Serum level would indicate the test was possibly a false-negative and the tissue should be retested or a biopsy done.


http://her2support.org/vbulletin/sho...ht=walt+carney
"...The serum HER-2/neu test is cleared by the FDA for monitoring blood levels of the HER-2/neu protein in women with metastatic breast cancer. So it is indicated for patients with metastatic breast cancer. Studies have looked at patients who have received a variety of therapies including hormone therapy. The test is indicated in patients with metastatic breast cancer, regardless of treatment and is valuable in monitoring changes in serum HER-2/neu levels. Increasing serum HER-2/neu levels reflect progression and decreasing levels reflect response to therapy. Having values below 15 ng/ml only tells us that the number is normal, it doesn’t tell us if you are HER-2/neu positive..."


<3 Lolly

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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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