No Herceptin

barbiecorn · 05-18-2014, 08:47 AM

Has anyone for whatever reason not taken Herceptin and still cancer-free and if so, how long has it been?

AlaskaAngel · 05-18-2014, 11:35 AM

As a stage 1 HER2+++ I was diagnosed before trastuzumab was available other than off-label while the trial was still in progress. I didn't know anything about trastuzumab at the time but did request to participate in clinical trials for HER2 positive bc. My onc failed to mention the trial to me, or to help me with accessing information about possible clinical trials myself. I instead had CAFx6, rads, and a brief run of tamoxifen but no trastuzumab, no taxane, and no AI. I have so far not recurred.

Because it is now standard treatment for most HER2 positive patients, we don't know what the percentage is who would be like me, or which patients they might be.

There are others here who have also posted over time who did not receive trastuzumab.

Adriana Mangus · 05-18-2014, 01:42 PM

Hi Alaska,

Herceptin was approved in 1998 maybe earlier than your diagnosis in 2002,
perhaps your doctor did not mention it to you. I see you are Hormone receptor positive as well as Her2+. Lucky you-- haven't had a recurrence since.

You can always ask to be placed on a 6month to a one year herceptin only therapy, just in case.

Take care,

Adriana

Lauriesh · 05-18-2014, 01:54 PM

Herceptin wasn't approved for early stage until 2005. I was diagnosed in march 2005, before it was approved and by the time I was starting Taxol that summer, it had been approved.

suzan w · 05-18-2014, 05:29 PM

Yes...I too was diagnosed in May 2005. I received herceptin for the first 7 months "off label"" because it had not yet been FDA approved for use in early stage. I also had to do chemo , adriamyacin/cytoxan before I could get herceptin. part way through my herceptin year the FDA approved it for early stage.

Bunty · 05-18-2014, 05:30 PM

As I was diagnosed late 2000, Herceptin was not available to me as I was early stage. (Here in Australia, it was only available to those who were Stage IV). I developed Stage IV in October 2007, and have been on Herceptin ever since, with the chemo thrown in from time to time.

Barbiecorn, I can't see your background in your signature, but curious as to why you are asking.

Marie

barbiecorn · 05-18-2014, 06:09 PM

I am asking as I did not take herceptin due to health/heart issues and I was HER2+ (mid-range) - I had bilateral mascectomy and change in diet, supplements, juicing, etc. I am two years out from surgery and was just wondering if anyone else did not take herceptin but are still NED. Thank you for your responses.

AlaskaAngel · 05-18-2014, 07:45 PM

Hi Adriana, 1998 may have been when trastuzumab was approved for use for those in the clinical trials. It was approved for adjuvant use in 2005, but otherwise some got it without being in a clinical trial by having an onc Rx it "off-label". I was over 2 years out from CAFx6 when it was approved for adjuvant use and I asked my onc about it. He said he would give it to me if I wanted, but that he did not believe I would get any benefit from it. I chose to skip it, and it appears he was right about that.

Barbiecorn, It is good to see you post. There are others here who are just about as far out from treatment as I am who also didn't receive it, but who may not visit often now that they are farther out from dx and tx.

A.A.

barbiecorn · 05-19-2014, 06:22 AM

So glad to hear this positive posting...not having taken Herceptin and having the HER2+ in my breast cancer has concerned me but I do feel good that some of us are still okay even without Herceptin...I know it is a daily concern once we have had a breast cancer diagnosis...but it is something we sisters must live with...I try to live each day to the fullest and hope for the best and take care of my body to keep it as healthy as possible...My well wishes to you all....