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Old 07-10-2007, 10:48 AM   #1
Christine
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Need your input /Dx tests

To all you women,
We are speaking to a large group of marketing reps about Diagnostic testing..
My question to you is .... how many of you have tried to the "ELISSA' her2 serum test by Bayer., a simple blood test that monitors the ammount of her2 cells in response to treatments and monitors any progression with or w/o chemotherapy.
Thanks for your reply.
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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 07-10-2007, 10:56 AM   #2
Grace
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Christine,

I've been using it, twice, but I'm not sure I'd recommend it to anyone else, as it puts me in fear mode when I do it. My first was elevated (16) right after diagnosis, and my cancer was very small, so I went from being relatively comfortable with my diagnosis to being scared all the time.

I think if I were Stage IV, I would definitely use it, but I wouldn't recommend it for an early breast cancer. And I admit this may just be the coward in me speaking.
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Old 07-10-2007, 11:49 AM   #3
hutchibk
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My doc doesn't use it yet. He doesn't believe that it is "ready for prime time" yet. He wants to keep an eye on it and see how it's accuracy improves over time.
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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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Old 07-10-2007, 12:26 PM   #4
StephN
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Taken 3 times so far -

- to corroborate NED status with other tumor markers and scans.
I am stage IV, so look forward to the results as this test is supposed to be able to show progression before the scans can pick up small tumors.

My med onc has total faith in this as blood screening far as I understand.
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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 07-10-2007, 12:27 PM   #5
Barbara H.
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My oncologist will also not use it at this time.
Barbara H.
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Old 07-10-2007, 12:44 PM   #6
tousled1
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My oncologist orders the HER2 serum test for me every 12 weeks. She feels it is a good prognostic tool especially since I'm Stage IIIc.
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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 07-10-2007, 05:43 PM   #7
chrisy
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my oncs don't use it. Although it is one of the things they are measuring on the clinical trial I'm on with Tykerb/Avastin, so maybe they will get more data to support it's use.
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 07-10-2007, 07:44 PM   #8
Joe
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Here is the latest published literature about the serum test:

www.her2support.org/temp/serum.pdf

Note: Steph failed to mention that her medical oncologist is an internationaly recognized cancer researcher.

Regards
Joe
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Old 07-11-2007, 10:25 AM   #9
Kim in CA
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Christine,

I have been using the Her2 Serum test in conjunction with the CA15-3 and CEA tests. I get my tumor markers run every 3 weeks when I get my Herceptin. We usually only run the Her2 Serum test when my markers start creeping upward and need reassurance that I am still NED. So far my Her2 Serum results have always been in the normal range. Being stage IV, I feel this is the best way to stay on top of things.

We still do regular MRI's of my brain, but don't do regular PET or CT scans anymore to avoid excess exposure to rads. If I have a suspicious pain my onc won't hesitate to order the appropriate scans.

Kim
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Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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Old 07-11-2007, 12:16 PM   #10
Lee
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My oncologist uses this test every 4 months or so, when I am in between scans.
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Old 07-13-2007, 12:54 AM   #11
Cathya
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Christine;

I travel to the US to get this test and my onc watches the results....his latest comments confirmed to me that he is following the research on it. After being in the normal range for a year, a few months ago I moved up to 16. I am currently waiting the results from a test I took last week. My onc has me undergoing brain mri, ct's of neck, chest, abdomen, pelvis and bone scan. Nerve racking times but I am grateful for the serum her2 test as an early indicator of potential problems.

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 07-13-2007, 07:06 AM   #12
Shell
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Christine-

my onc uses it only to humor me when I ask for it. i've had it about 4 or 5 times. when the xeloda and doxil and everything else started failing me, my numbers skyrocketed - I want to have it done again now that I am on abraxane, but let's just say I would be thrilled to see even a 16!!!

Kind regards,
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Shell

init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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Old 07-15-2007, 10:11 PM   #13
Gina
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Thumbs up Serum her2 test really works

Hi, Christine,

Thanks for posting this important thread. As you know, I have long been a strong supporter of the value of the serum her-2 test and have used it regularly for many years in combination with the CA 125 and the CA 27/29 along with regular CBC and blood chem panels. I have it drawn just before I take my herceptin infusion, every three weeks along with all the other blood work, as that is when the serum her-2 level is at its peak in my system and that way it helps me compare apples to apples for my research. If you just take it haphazardly, without regard to where you are in your herceptin cycle, the number can vary considerably, but still, anything over, even 12, and moving upwards needs immediate attention, or at least that has been my experience.

Love the new look of the web-site,
Gina
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Old 07-16-2007, 05:05 PM   #14
Liz J.
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Hi Christine,

I asked my onc about it awhile ago and he said "we don't use it".

All the best,

Liz J.
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Old 07-16-2007, 10:42 PM   #15
MCS
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First of all, let me tell you how pretty you look in this picture Chrisine !

When I requested the Bayer Serum Test from my oncologist, he said that because I was ER/PR -, it did not monitor any bc progression well. In other words it was for ER/PR + people. So I am now confused and concerned why I don't get it. Please let me know

thank you

MCS ( maria)
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Old 07-16-2007, 11:55 PM   #16
sarah
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In France I don't get the CA27/29 or this serum test. I would like to print something on it to show my onc so if you can suggest a succinct version, that would be appreciated. And any medical reviews pointing to its success.
My onc is generally quite up to date on things and open to new ideas but of course there are always protocols to follow. Maybe France would be a good place for them to do a trial?
sarah
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Old 07-16-2007, 11:59 PM   #17
jones7676
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My local onc doesn't use it, however I'm going to Chicago for a "consult" the beginning of August and I will ask about it there to see what thier opinion is.
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Old 07-17-2007, 01:07 AM   #18
jhandley
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Smile her2 serum test

Hi Christine
This test is not available in Australia however I had it done while visiting my sister in London in Jan 07; I had been off herceptin for 4-5 weeks by then and my result was 7.6.
I spoke to my onc yesterday about this test and he said they are waiting for more data on its usefulness. I think it is very important for MBC and another way it could be used would be to give some measure to the use of things like olive leaf extract, high dose fish oil and flaxseed oil or flaxseed meal on her 2 serum levels; ie to bring them down. It interests me greatly to read that one flaxseed muffin a day containing 25 g of flaxseed meal can reduce the over expression of her 2 by 70 %.

I am sure that some easy experiments could be done to test the effectiveness of the above using this serum test.
Food for thought so to speak.
Jackie
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Old 07-17-2007, 06:17 AM   #19
Shell
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Maria (MCS)-

The test has nothing to do with ER/PR status as far as I know. It is used if you are her2/neu+++ to monitor the levels in your system. Perhaps your onc hasn't heard of it yet, and just gave you an answer to respond... I learned about the test from this site and had to educate my onc...

Regards,
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Shell

init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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Old 07-17-2007, 10:38 AM   #20
Grace
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Flaxseed and HER2

Hi Jackie,

I've been using 25 g of flaxseed in my oatmeal every day now for ten months because of the Canadian study, and although the HER2 serum has come down some (from 16 to 11.5), it took quite a while longer than the Canadian study (which I think lasted a month) and the drop is nothing like 70%. It's about a 25% reduction. Also, I've been on herceptin even longer than I've been using flaxseed so I have no idea if the drop is due to the combination of the two, just the herceptin, or just the flaxseed. And as my oncologist says, the drop may have nothing to do with either.

Cathy,

My oncologist only orders HER2 serum for two patients (me and another because we both asked). He says the HER2 marker of the other patient went up more than nine months ago, and they've done all the scans, etc. and found absolutely nothing. I hope you find you're in the "absolutely nothing" camp.

Good luck.
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