What's the chance I went from her2 neg to positve?

judiek · 07-14-2006, 12:04 PM

Hello Again,

I made it through the brain MRI and the result was clear. I wasn't so luck on the ct of the liver. I have new lesions and the old ones are bigger. I want to ask my onc to have me retested for her2. The last time I was checked was in Jan of 2004 when dx with mets. They used the FISH test and it came out 1+. I know he is going to tell me that it's a slim chance that I am now her2 positive. Have any of you been restested and found yourself to be positive after a dx of negative. Also, I thought I read on this board that tykerb may work if your her2 is 1+. Anyone recall this. Thanks again for your input

I have had
FEC
taxol/avastin/arimidex/xeloda/navelbine/gemzar.

I'm so bummed as gemzar was so easy for me.

I was hoping that maybe we could add one of the platin drugs to the gemzar. I see the onc on the 18th to talk about tx options.

Thanks again,

Warmly,

Judiek

karenann · 07-14-2006, 12:29 PM

Hi Judiek,

I have heard the same thing about Tykerb... it goes after both the Her1 and Her2 receptors and even if you are Her2- , you can still be Her1+. As far as your Her2 status changing from - to +, I don't know if that can happen or not. I do know that sometimes when tumors are tested with the ICH (I think that is right) test, that the Her2 results can be negative and when retested with the FISH test they can be positive. The FISH test is the more accurate of the two. I think, if you feel strongly about it, you should be retested and at the same time, have them test your Her1 status.

I am keeping you in my thoughts and prayers.

Karen

StephN · 07-14-2006, 02:24 PM

Hello Judie -
Well, it seems that the strangeness with your pupil is not from anything in the brain. That is good news.

Your liver is something else. Are you still on a hormone supressor in combination with the other drugs?

Tumors can change to positive or neg for HER2. But, this would be for NEW tumors, it is my understanding that the old tumors stay what they were in the first place.

Biopsy of liver can be tricky due to placement of the tumors. There may not be any way to tell short of the Bayer test if you have cell sheds from HER2 positive cancer in your blood. Just a thought.

It seems your list of questions will be long when you have your consult next week. You still have some of the new forms of older drugs such as Abraxane and Doxil to look at.

All the best!

CLTann · 07-14-2006, 04:20 PM

My understanding of HER2 test is done on tissues from operation or sampling. Therefore, unless they fetch another piece of tissue from your body, they can only re-examine the old sample. Of course, sometimes the slide reader could have made errors and on re-examination of the same slide (or looking at the different part of the slide) they may give you a different interpretation.

Ann