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07-20-2007, 06:45 PM
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#21
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Senior Member
Join Date: Oct 2005
Location: Alexandria, VA
Posts: 197
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Just say yes to the serum her-2 test...
I know this is controversial, folks, but we are making this more complex than it need be...
Whether you are stage 1, 2, 3, 4 or somewhere in between...if you HAVE EVER been told and shown evidence that you are her-2 positive in ANY way, you need to monitor the levels of the her-2 protein in your blood. If they stay around 12 or under...hurray for you, but keep in mind this is no GET HOME FREE CARD..you could still have other cancer stuff going on, but at least you know where your serum her-2 is...HOWEVER, if the number consistently starts going up...and usually it will start doing this quickly, unexpectedly, you may feel wonderful...but if the number starts on a climb exponentially, week after week, month after month...take it from a 10-year survivor...who has used the test regularly since July 2003, something is going on somewhere and you don't even have to know where, just get thee to Herceptin Quickly....
As to the expense argument...the test costs about $120 to $150 bucks...this is way cheaper than surgery, more chemo drugs, ablation, radiation, blah, blah, blah...
I have used only herceptin since 1999 and have followed the serum tumor marker since 2003. It can work...
This is science not pulp fiction. If the protein is in your blood, you have her-2 over-expressing somewhere...let's not make this complicated.
Sorry to be so tough on this one, but why be "against" one of the only real tools we have in this horrible fight???
Gina
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07-20-2007, 08:11 PM
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#22
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Gina, As far as I am concerned...your post is right on the money. I know I am ALL for it. Like I keep saying...its another tool they have and it should be used. I think there is more then enough proof that it works. Since I am a stage III'er with 5 of 16 positive nodes and NO radiation I want to be monitered with any, and all good tools they have available. To me there is no excuse not to use it at this point.
Chelee
__________________
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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07-21-2007, 06:06 AM
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#23
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Senior Member
Join Date: May 2006
Posts: 221
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Again, we're combining two different questions and the answers are not the same for both. It is not complicated at all, as you say. But combining the arguments is making it seem so.
1. Does the Her2 serum test "work" to monitor activity of Her2+ disease? Probably yes.
2. Is there any indication or recommendation to DO the the test (or any tumor marker or scan) after treatment for primary disease? No. Here are the NCCN guidelines on follow-up after primary disease:
Interval history and physical exam every 4-6 mo
for 5 y, then every 12 mo
Mammogram every 12 mo (and 6-12 mo post-RT
if breast conserved) (category 2B)
Women on tamoxifen: annual gynecologic
assessment every 12 mo if uterus present
Women on an aromatase inhibitor or who
experience ovarian failure secondary to
treatment should have monitoring of bone health
Assess and encourage adherence to adjuvant hormonal therapy.
Sorry, it lost its formatting in the cut/paste. NCCN does not recommend any scanning or tumor marker testing because evidence shows that this is not of any benefit. I know it's counterintuitive to hear that there's no advantage to catching mets before there are symptoms. But that's what research shows. And you can probably think of examples, right on this list, that do support this information:
Think of women with widespread and urgently life-threatening mets who responded to treatment and had long periods of NED. Then there are those with initially small mets whose disease progressed relentlessly. Whether either of those women detected their mets a month or two earlier than symptoms would have arisen (because they were scanned or had markers done) would make no difference to outcome. They would not live longer (although they'd live longer with the knowledge of mets) nor would method or timing of detection affect their quality of life.
Oops, late for work. I have a little more to say and will try to get to it tomorrow, about uncertainty.....
Debbie Laxague
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08-08-2007, 02:20 PM
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#24
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Senior Member
Join Date: Sep 2005
Posts: 556
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how accurate is the Her2serum test?
Anybody is successful in monitoring their recurrence with Her2Serum test? Does this correlate with CA27-29?
Thanks,
Julie
__________________
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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08-08-2007, 06:10 PM
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#25
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Senior Member
Join Date: May 2006
Posts: 143
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Hi all.
I'm chiming in as another who had "routine" scans (scheduled by my onc, I never asked for them) which led to two terrifying false positive scares, (the second scan was scheduled to make sure the first false positive had really been just that) which then led to even more scans to finally prove that the earlier scans were indeed clear after all!
I've had it with routine scans. I continue to do blood work (no her 2 serum) and physical exams, but that's it, unless there are symptoms.
Linda
stage 3a
over 2 years ned
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08-08-2007, 09:50 PM
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#26
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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I really must chime in on this one with my experience.
My regular tumor markers were never reliable. 15.3 at diagnosis os Stage IIIC and basically still at 15.3 and I'm now Stage IV
HER2 serum test - baseline right before beginning Herceptin was 10.1. While on Herceptin it continually dropped and reached a low of 6.3 and stayed there. Stopped Herceptin April 20th. End of June had HER2 serum test and it came back at 9.5 -- still well within normal.
Oncologist then ordered a ct scan of chest, abdomen and pelvis -- mets to both lungs
Oncologist also ordered a ct brain scan - a blip showed up on one image we thought it was nothing but oncologist ordered an MRI to follow up. Lo and behold a 5mm met to the brain.
Evidentally, my system for some reason is very sensitive to the HER2 serum test but not the regular tumor marker test.
Each and every one of us is different. Some women on the board can rely on their tumor markers and if they go up then it means something is going on. Others tumor markers just don't jive.
The HER2 serum test was approved by the FDA not too long ago and I think that is why some oncologists don't use it. I'm very thankful that mine does otherwise I would not know that I have lung mets and a met to the brain as I have absolutely no symptoms.
That's my two cents on the HER2 serum test. It certainly works for me and my oncologist and I agree that we will continue to use it to monitor me.
__________________
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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