1st timer - I'm 30 (was 2a) and now I'm 4 - SO SCARED!

[julierene]

At 28 years old and 9 months pregnant, I was dx with 2.0 cm IDC, grade 3, er-/pr-, her2 +++ in January 2004. I had a healthy baby boy, a double mastoctomy that also revealed er+/pr- DCIS in other breast, and 4 rounds of AC. I begged my onc for Taxotere, and he hesitated so much that with no nodes positive, he didn't feel it was a good idea. But 6 months later, he called and told me I could now have it. So in August 2004, I took 4 rounds of Taxotere. I even had my ovaries removed.

Everything seemed to be going ok until around end of August 2005, and my back started hurting. I had just started a new job and was sitting at the computer all day, so I figured my back was not used to the strain. I had to visit a chiropractor about 4 years ago, for the same problems... But anyway, my onc didn't seem concerned. I had a clear bone scan in December of 2004. I went to my PCP by October and she gave me muscle relaxers and did some x-rays and blood work that looked good. By November 05, I went to a chiropractor again who used the clicky thing, very easy on the bones. And it seemed to be helpful. But by December, I thought this had been too long and I told my onc I wanted a bone scan. So on in early December, I had a hot spot on my back and another one on my hip joint. MRI showed 3 areas on my back. Then PET showed 1 on my femural neck bone, and several more in my liver! I had to really push my onc for a brain MRI to rule out brain mets. That's next Friday...

But so far, I have had rads to the big spot on my spine, and my femur bone. I am on Taxol + Paraplatin + Herceptin + Zometa. My first treatment was a little scary. I hurt so bad in my liver area I could hardly talk without wincing from the pain of the movement of my breathing. I had cold sweats, and when I bent over, there was so much pain in my head, I thought I was going to be dead in less than a month if this was from the mets.

I was concerned when I asked him out much Herceptin I got. He put me on the 4mg for the 1st dose, then only 2mg after that each week. It doesn't seem like enough... Yet, the 2nd dose was so much easier. I still felt a little cramping in my liver area. And I have had a 3rd dose yesterday, and still I feel a little cramping. Thing is... the cramping goes away after a couple of days. I know my mets aren't huge, but it still seems like since I have so many, that I should be getting the higher doses like I see posted on this board. What should I do?

1 more question... Do you gals notice that Herceptin is lengthening the life span of women who are her2+++? I really hate the thought of that 16% 5-year statistic. I'm only 30 and I am married with 3 young children.