Thank you All
 

Thank you all for your many responses. I have been asked by the Bayer/Dako to participate in a discussion at ASCO. I will do my best to get more information and answers for your questions. In my own case, I will continue to take this test every 2 – 3 months, even if I am presently diagnosed as NED (No Evidence of Disease). I feel it is essential by any means to get the earliest possible indications from all tests available that works for you! I have been tested five times over the past ten months. Results are always around 8. Slight changes are normal as long as it does not go up steadily over 15. To me, this would mean it is time to get CAT or MRI scans of my body to rule out any progression. This test could alert us to get scanned. I don't have any reason to think I have more tumors except my brain is always under surveillance. Thank God I can continue to be free of all tumors.

Hugs,
Christine

Christine;

My Onc at UM Sylvestor routinely uses both the Her2 serum and now the CTC tests. I get them about every 10-12 weeks. So far everything has been within expected ranges. If we were to see a rise then we would do scans more frequently. While they remain low I get scans and Brain MRI only every 6-7 months.

My Onc. mentioned last week that he has found the tests extremely useful in many of his patients.

kk1

Christine,

Like many others, my onc sees no value in it. I'm on continuous chemo (currently Xeloda) plus Herceptin and Zometa. He says, and I must agree, what is the real value of this test at this point. I'm already on Herceptin and to date there's no substitution, say if the test were high.

Love and light,

Lisa

Value of test
 

Lisa -
When we met with the team that has created and tested this test last Dec. in San Antonio, there were a few answers. But the concensus was that the best use of this test was to monitor stage IV patients who are beginning a new treatment to see if the number goes up or down at two weeks into that cycle, and continue the blood test to monitor success or failure of that or a new treatment. Dr. Julie Gralow mentioned starting a trial using the blood test in just this way.

The other recommended use of the test was as a way to monitor stage IV patients who are NED or close to NED. A rise in HER2 cells can indicate increasing tumor activity well in advance of the other tumor markers or detection of tumors by various scan methods.

In your case, it would be a good idea to see what Dr. Carney thinks about using this test. I would still think it could be useful as a way to monitor success of your treatment.

Christine,

Could you find out if a low reading the test could potentially help to discover that, while Herceptin is making HER-2 tumours regress, other HER-2 negative lesions are progressing (or not regressing) by comparing with other non selective existing markers?
If so, this would allow the onc to add other treatments to Herceptin at an oppotune time.

Christine;

Is there any information to answer the questions posed on this thread. I am still trying very hard to get this test in Canada. Thanks

Cathy

Christine;

I have just gotten off the phone from my contact at Dako Canada and he tells me that all of the documentation for the Canadian government has been given to Bayer Oncogene and they are the ones who are delaying this test being available in Canada. They want more publicity or whatever......it's really a catch 22 to me as my onc has written up the prescription for it but we can't get it so he won't be after it for others..... We also need a lab but the Dako guy said that if the lab here is set up Elissa (spelling? I think he means other of their tests..?) they should be able to do the test. So.....what response did you get from them and can you put any pressure on them for the Canadians on the site?

Cathy