Just found out I am HER2+ and need help

[Ally]

Hello everybody

I will just give you a brief history to start with:

I was dx Oct 03 with 2.2cm, grade 2, IDC, then in Feb this year with bone mets. Primary was 50% ER+. 10% PR+ and 25% HER2+.

I am midway through CMF chemo. and the oncologist told me today that after CMF I will have an oophrectomy, then on to Armidex.

I need some help though because I know nothing at all about HER2, I have been advised by a friend that I should really be on Adriamycin and that I should push for Herceptin immediately but my onc. told me that Herceptin would not be used yet and may not be needed at all.

What do you guys think about this, should I push for Herceptin now or should I take accept the path advised by my onc.

Sorry for such a long post.

Thank you, Ally xx

[Steph N.]

Hi Ally -
You wrote: "dx Oct 03 with 2.2cm, grade 2, IDC, then in Feb this year with bone mets. Primary was 50% ER+. 10% PR+ and 25% HER2+."

We need a little more info. I am curious why such a long lag time in starting your chemo if you are just now only half way. Did they wait a while after the surgery? Or have trouble deciding on the pathology?
If it is already in your bones, I think I would want to switch to Adriamycin - but they don't like to give this in combination with Herceptin as that combo is hard on your heart.
Maybe you could change to Herceptin and Navelbine, which was so successful for me and for many other women on this board against our mets. The idea here is that you are NO LONGER treating a primary situation since it has already moved.
I also think I would get a 2nd opinion even tho you are in the midst of treatment. Ask around for a top person in your area.

[Lolly]

Ally,
I don't know as much about hormone positive bc as some of the other gals do, I'm hormone negative, so hopefully you will get some more info from them about that aspect of your onc's proposed protocol. I was treated with Adriamycin for my primary also, but since mets to skin and lymph have had Herceptin/Navelbine and now Herceptin maintenance. As Steph points out, the goal now is manageing a cronic condition, hopefully reaching NED status and maintaining it for as long as possible, and using the "big guns" as sparingly as possible, but do use them when necessary. Will be interested to hear what advice the hormone positive ladies have to offer.
hugs, Lolly

[Elisabeth from Ontario]

Hi Ally, I am from Canada and unlike our American friends, Herceptin is used in Canada only for mets. Perhaps it will be an option for you later. You say you have spread to bones already so I would think that herceptin should be part of your treatment plan at some point. A second opinion wouldn't hurt.
blessings Elisabeth

[Jackie]

Hi Ally,
I am er+, her2+++ with mets to bones & skin. I was on tamoxifen briefly after initial surgery, chemo & rads in 2001, but switched to femara after developing a blood clot. Mets to bones occurred in Dec, 2002, and I tried 3 different aromase inhibitors (or hormonal drugs) with no success. Disease progressed and spread to skin. I began herceptin with navelbine July, 2003, which was very effective (tumor markers dropped like a rock!) until Jan, 2004, and am now on gemzar + herceptin wkly, + zomeda given monthly to strengthen the bones, a new premed called Aloxi, and aranesp given via IV every other wk for low red blood count. My inital tumor was a fairly uncommon type called lobular which is quite aggressive. I agree that you might benefit from a 2nd opinion, and a 3rd if necessary!! The stakes are high and it's up to you to seek out the best medical treatment for yourself. Hope this helps and I wish you the best of luck!!