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.

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.

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.

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.

My oncologist will also not use it at this time.
Barbara H.

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.

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.

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

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

My oncologist uses this test every 4 months or so, when I am in between scans.

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

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,

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

Hi Christine,

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

All the best,

Liz J.

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)

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

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.

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

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,

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.

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.

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

Test
 

Hi Christine: I haven't had the Elissa2 Test.

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.

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.

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.

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