Are You Using the HER2/serum test? - Page 2

hutchibk · 09-08-2008, 12:01 AM

Thanks Joe, that is very informative. I will take the info to my doctor and see what he thinks...

Andrea Barnett Budin · 09-08-2008, 08:43 AM

My very excellent onc was immediately receptive to my request for the ELISA (?ELIZA?)HER2 serum bld test. It was done last Jan. I was normal. Forget the #. It was covered by my insurance company.

My new onc who is brilliant and highly informed/cutting edge, knew of the test but seemed to feel THERE ARE TOO MANY FALSE POSITIVES. He was concerned that he and I would be running tests and worrying unnecessarily were I to add regular serum bld tests to my ev 3 mnth panel of tests.

I know if I pushed, he would accede to my request, but now I am unsure. Same w/the hype about getting the ovarian cancer bld test. In that case, b/c of so many false positives, I go ev 6 mnths for transvaginal pelvic sonos, to assure myself that my ovaries are beautiful.

I must say that I have learned that hearing those words is the most joyfully complimentary pronouncement I have ever received. Also, 5 yrs back, I wound up w/the need for a hysteroscopy (in office) followed by a D&C, fibroidectomy, polypectomy, laparoscopy (in the outpatient clinic of the hospital) and then biopsy of course. These matters had to be checked out and all was well. I would not have found this is an ordinary GYN check I don't think, but even so wasn't scheduled for that for another 6 mnths.

It is all very bamboozling. Would really appreciate some concrete answers to the false positive issue. Anyone?????

Andi

hutchibk · 09-08-2008, 09:23 AM

Of course I would love some concrete answers as I know that my doc will hold steady on that concern before signing off on it.

Jackie07 · 09-08-2008, 10:19 AM

My oncologist is an ASCO fan. He never would do the tumor marker test and I wondered what they had been doing with all the blood they drew from my vein. Since they had not even been able to detect my recurrence during the 4 years after my first round of diagnosis and treatment, I really have no idea why I even bother to go to the hospital for 'routine' checks.

You can see I am not in a normal mind-set right at this moment. A lot of things have been happening lately that got me kind of 'mad'. And that three-letter-word has quite a few different definitions in the English dictionary. I do think 'upset' is different from crazy. But this whole breast cancer deal can really drive people 'over the edge' (can't find the definition in the dictionary, but my hubby told me it is similar to the word 'crazy'.)

Thanks to this board which allows us to 'vent'. It is the only place I can go when I need to restore my sanity.

'lizbeth · 09-08-2008, 05:42 PM

Joe,

I have primary breast cancer Stage IIb ER- PR-. I tested for the serum her2 and tested 12.8/13.5 prior to starting delayed chemotherapy. I started Taxotere/Herceptin June 13th. At what point in the future would it make sense for me to utilize the serum her2 again?

'lizbeth

Joe · 09-08-2008, 05:53 PM

I would suggest every 3 months at the beginning of therapy.

Regards
Joe

Andrea Barnett Budin · 09-08-2008, 06:32 PM

Hi Jackie,

I call that feeling you describe as STRESSED TO THE NINES. My dghtrs persist in telling me the expression is *dressed to the nines* -- but I know what I am talking about... It comes w/the territory. Then I collect myself and lie down, tune out and converse w/the Universe. In silence, of course. Sending loving energy...

Andi

'lizbeth · 09-08-2008, 07:04 PM

Joe,

I'm going to run up against the "Standard of Care" argument for not using the serum her2 unless I can come up with some research to show it is an effective tool for primary breast cancer. The doctor I need to convince thinks that Her2 ECD will be always be normal in primary breast cancer.

Any suggestions?

'lizbeth

Joe · 09-08-2008, 08:56 PM

Liz,

Show the following to your onc:

www.her2support.org/temp/serumher2.pdf

Regards
Joe

hutchibk · 09-08-2008, 10:30 PM

Jackie - if you are inclined to come to Austin for treatment (it might be just barely too far for you to travel...) I will happily give you my Onc's info. He is simply amazing. He is so thorough and we have found each of my 3 recurrences so far at their very earliest stages and have beaten them back each time. Let me know.

jones7676 · 09-09-2008, 12:23 PM

My oncologist said no.....he did not feel it was reliable enough. I brought him the info provided here - we will see if it helps. I am particularly interested since blood tests (cancer counts) do not work on me.

JustwannaBE · 09-26-2008, 01:25 PM

I had the test run after my liver resection surgery in April and it came back in normal (6) range. I asked my onc to run it on me, and he did so, but said it was old technology. I wish I had that test run before my lumpectomy and/or chemo so I would have something to compare it to, but you live and learn.
You may also want to check out this new HER2 test. I had my liver tumor tested there and it showed up negative for her2 proteins..... HERMARKASSAY.COM.

Soccermom · 10-03-2008, 10:28 AM

Joe, Question...is it possible to go and have the original tumor tested to get a baseline Serum her2 reading (had not had neoadjuvant treatment)?
Thank you,Marcia

Chelee · 10-07-2008, 12:12 AM

I would be interested in the same question Marcia asked about having our orignal tumor tested with the Her2 serum test? Does anyone know if that is at all possible to get a baseline done that way?

Chelee

Marily · 10-08-2008, 11:31 PM

Hello,
I have been out of commission again getting my new "neck". I now have 4 cages in my c spine from 2-3 to 6-7.
I saw Dr Slamon 8 weeks ago and stopped Herceptin after being on it over 7 years.
I am now doing the Bayer test every 6 weeks for awhile I have been using that as a reference when it came available as the Alyssa test.. and found info on it on the computer. I have never had tumor markers so.... I have been from 6 to 9.9 and last test 6.6 So it has been my way of watching for a long time...My Dr had not heard of it but was willing to check into it and then let me try.. she has since put others on it also.
I will have a ct/pet every 3 months. Dr visit every 4 months. ( my onc left our clinic after being mine..for 8 years and I have yet to meet my new one so a bit leary of this change along with all the others.)
Dr Slamon also said I could stop the Aromasin which my old onc and I are a bit leery of doing, since I went from a tiny lump to stage IV in two months 8 years ago.I just feel stopping everything at once is too much.!
I also went fromstage IV to NED in a year and have remained so. a BLESSING if there ever was one.
Now after reading all you have to say hereon stopping I am again worried... but since I have been having "allergic reactions, or building up antibodies to the Herceptin, I felt it was the correct thing to do.
I hope and pray it was.
"Joining with the new group of advanced women paving the way" AGAIN.. .. We will see.

love and hugs, Marily

RobinP · 10-15-2008, 09:44 AM

To date there is no indication whatsoever that the serum her2 test would benefit early stage her2+ patients breast cancer patients. If the level was normal, this would not contraindicate a need for aggressive chemotherapy, herceptin and adjuvant treatment, as shedding of her2 into the serum at levels of concern may not occur in early disease process. If positive her2 serum tests results occur in early stage her2 bc, there would be no change in the aggressive treatment that would normally be offered to early stage her2+ treatment. Therefore, there really is no Routine need to test her2 serum level in women who are diagnosed with early stage her2+ BREAST CANCER.
From an RN who has studied this issue.
PS. Years ago, I had my serum level tested for her2 prior to adjuvant Herceptin. The result was
negative but in no way did that alter my decision to recieve Herceptin.

rcj11 · 10-16-2008, 12:46 PM

Questions about CTC test:

From RCJ11,

The CTC test was taken 1 week after she began weekly Herceptin & Abraxane infusions. The test showed NO ctc's. She will be given another test 4 weeks after beginning treatment & I will report results.

Can anyone explain this CTC test result so quickly after beginning new treatment when PET scan 1 week earlier showed significant progression? Is the test unreliable or unable to pick-up certain kinds of circulating cells? Please reply with any experiences having similar results or possible explanations.

Following is Kathleen's history copied from other posts I have made on this site:

Ixabepilone & Tykerb
Success with this combination after only 3 treatments. My wife, Kathleen, is 58 yrs old, original breast cancer 7 years ago, removed left breast, standard chemo & radiation. Followed for 6 yrs with Herceptin when treatment discontinued. 9 months later her cancer returned with 3 lymph nodes involved and a mass above her heart. Treated with Tykerb & Xeloda for 9 cycles with terrible side effects & progression of disease. PET scan disclosed 8 lymph nodes involved, growth of mass above heart, & small mass in plura space below left lung. Discontinued Xeloda and began infusions of Ixabepilone every 3 weeks and continued daily Tykerb. After 3 infusions cancer is undetectable on PET scan. Will continue infusions for at least 2 more cycles & thereafter the plan is to continue daily Tykerb and monitor cancer. Consider this treatment!

Next post:
My wife, Kathleen, was NED for 6 years maintained on Herceptin only. 6 months after she ceased the Herceptin infusions her cancer returned with multiple mets. She was removed from Herceptin because of fear of heart damage. In hindsight we should not have made that decision. We can't prove that the herceptin was still effective when she stopped taking it, but why take the chance especially when new research indicates that long term use of Herceptin does not increase risk of heart damage.

For information on Kathleen's treatment since the cancer returned see thread under "Ixabepilone & Tykerb. While the result of her treatment with ixabepilone & tykerb was favorable at 1st, her cancer returned while taking only Tykerb as a maintenance drug. She is now back on Herceptin & Abraxane but only for the past 2 weeks ( weekly infusions) so too early to know the effects. Our prayer is that the Herceptin is still effective for her.