Anyone else slightly Her2 pos?

Watson · July 2008

Hello,

I was originally dx'd in May 2005 with presumably triple neg bc. I was dx with lung mets early this year. My onc at the time did not think it necessary to test my lung mets for her2. I finally switched to MD Anderson and the first thing my current onc said was that it was imperitive to test.

He retested my lung met AND my old breast tumor from 2005. And guess what, since the beginning I have been slightly her2 pos. I'm not sure what they measure, but something about how the cutoff for being positive is 2.2 and I'm 2.3.

He also said that the positiveness (such a word?) was found on the inside of the cell, not the outside and since Herceptin works by binding to the outside not sure how this will work but he has added Herceptin to my current Gemzar chemo. (Gemzar is working quite well by the way) Laughing

So I guess what I'm asking is if anyone else has had a low positive Her2 and if Herceptin worked?

Thanks!

Watson

snowyday · July 2008

Watson, I just found out today that I'm not triple neg but her2 positive the hospital apparantly let a path report get filed but unsigned. So I'm hunting for information on herceptin or alternatives as they told me today I would have to have infusions every three weeks for 18 treatments. Thats a year and it scares the heck out of me. I complained about being tn, but now I'd give anything to be tn. again. Scared and waiting for repsonses. I will share with you, and the best of luck. My her3 was 2.3 the guidlines are 2.2 so I to am right on the cusp. Twice I've been misdiagnosed and I honestly have lost all faith in the medical system.

swimangel72 · July 2008

Hi - I'm Her2+ - and from what I've learned, a score of 2.3 is "equivocal" and thus your tumor needs to be sent to another laboratory for a FISH test to determine if you really are positive. Check out the following link for more information:

http://www.breastcancer.org/symptoms/path_report/the_cancer/her2_status.jsp

Since my tumor was Stage 1 and Grade 1, my oncologist was very surprised at the first FISH test results saying it was Her2+ so he sent it to another laboratory for a second opinion. Unfortunately, the results were the same, and I had to start on chemo (before that I was only to take Arimidex for 5 years.) I felt this blow as hard as the original blow when I found out I had BC......especially when they told me I needed a chemo port installed (not because of the Herceptin, but for the Navelbine which can burn your veins.)

Herceptin has very little SEs (I only got the runny nose the first two infusions) - and it sounds like the new miracle drug, so don't worry. Just be sure to ask your onc if your tumor sample was sent out for a FISH test.

Zzap · July 2008

Snowy,

Don't sweat the Herceptin. I had 4 rounds dd A/C, then 4 rounds dd Taxol + Herceptin, followed by Herceptin every 3 weeks until I had a year of it. The Herceptin is nothing like chemo, I had almost no side effects from it (unless my shelly nails were caused by it instead of chemo). Herceptin is your friend, and the least troublesome part of treatment. IMHO.

Watson,

I'm glad you've got another bullet in your arsenal. I'm sure the Herceptin can help you some.

Anyone else slightly Her2 pos?

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