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Old 07-17-2007, 12:10 PM   #21
tousled1
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IM thankful tht my onc uses the HER2 serum test. My baseline was 10.1 and that weas right before I started Herceptin. I had it done every 12 weeks and it constantly dropped to a low of 6.3. I've been offHerceptin since the end of April and my last HER2 serum was 9.5 so I asked for a scan -- well I now have lung mets. I strongly believe that had I not been having the serum test I still would not be aware of my lung mets since onc and I decided that we would not do rountine scans unless I had symptoms or my markers went up.


This is not to say the Serum test is right for eveyone or that a rise would indicate mets. But, in my case my body was very sensitive to the test.
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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 07-17-2007, 12:50 PM   #22
Chelee
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Kate, Your orignal post about your lung mets is what really got me thinking about WHY they don't use this for us her2 gals. In your case it seems to have put up a red flag right away. I for one want to know as soon as possible if something is going on & the her2 serum test sure seemed to work great for you.

There may be some women that rather not use this as it does cause anxiety for many...but I would really look forward to the regular use of this in my case. Hopefully soon there will be enough proof that this is a very valuable and reliable tool to use.

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 07-17-2007, 01:25 PM   #23
Adriana Mangus
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Test

Hi Christine: I haven't had the Elissa2 Test.
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 07-17-2007, 07:10 PM   #24
Lolly
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Christine, after our talk this morning regarding the GSK teleconference, I realized I'd meant to post on this thread but somehow forgot; apologies for the delay, hope it's still timely.

My onc ordered the Elissa Her2 Serum last spring after I started progressing, to monitor response to new treatment. I had the test once monthly for 3 months;

month one - 12.7
month two - 11.5
month three - 6.8

PET/CT the following month showed no new progression and active tumors shrinking, so it really put our minds at ease that the active cancer was under control and any circulating "baddies" were being eliminated.
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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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Old 07-17-2007, 07:32 PM   #25
StillHere
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No, I have not had the HER2 serum test to my knowledge. I just started asking the lab tech what she is drawing ea visit the past 7 mos. Just CBC's, Chem panels and CA 27-29 tests. My CA-27-29 markers are gradually going up Dec- 28, Mar- 37, Jun- 41. Have another draw this week Friday. If trend continues have PET scan.
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04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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Old 07-18-2007, 05:30 PM   #26
StephN
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Talking Clarification

Hi -
I already responded on this thread, but was not very detailed.

Saw my med onc and mentioned the debate here on this test. She said that is expected as there are trials now that will collect more data on this test, as well as individuals using it to monitor stage IV.

She would not be inclined to use the test for early stage cancer at this time, as there are other tests. I did mention Kate's finding with her number still being in the "normal" range. My onc's reaction was "that's interesting as one more thing we are still trying to detemine is the cut point." From this comment I gather that the normal range as now established came from a pool of data and there is still some possibility for the range to adjust. (Unless she was meaning by "cut point" WHO should have the test ...)

She said that in a year from now there should be a lot more info available and data crunched. That would be the time to look for more with which to arm yourselves in asking for this test if not a stage IV patient, and your onc is reluctant at this stage.

P.S. My numbers have been in the 7.9 to 8.9 range. My other markers (CEA, C-125 and CA27-29) are steady as can be. The ovarian marker is taken since once we have one cancer we are at a higher risk for others.
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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.

Last edited by StephN; 07-19-2007 at 12:01 AM.. Reason: additional thoughts
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Old 07-19-2007, 04:20 PM   #27
Helen
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I have asked my onc about it several months ago and he said he does not do it. I don't know how I can convince him to do it for me or how I can get this test for myself.

Helen
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  • Diagnosed May 2005 8 months after giving birth. Stage IV due to a single liver mets.
  • Carbo/Taxotere/ Herceptin combo for 6 months
  • Herceptin/ Navelbine
  • Recurrence on the same liver spot in 7/07
  • Liver resection 9/07
  • Tykerb/xeloda 10/22/07
  • NED since 9/07 and continued Tykerb/xeloda
  • PET/CT in May 2009 show small spot in lungs. Continued Tykerb/xeloda
  • PET/CT in Aug 2009 shows progression on lung nodules (slightly bigger)
  • Onc considering Taxol/avastin
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