possible herceptin 5 years post chemo??

[kristen8594]

Hello....I was wondering if anybody has received herceptin for the first time 5 years (or any number of years) after chemo?
I have completed my 5 years of tamoxifen and for some reason i have become peri menopausal again (48 years old, 42 when dx) All previous blood work has come back post menopausal until the one the oncol ran right before putting me on femara. Soooo now I cannot go on femera but she presented me with the possibilities of going on herceptin. Funny thing is that I missed the window of opportunity for herceptin because the of the timing of my dx. It was still in clinical trials at the time and I was not offered it. Every six months when I go to the oncol I have asked about getting on a post chemo trial or anything at all and there hasn't been anything. I am strongly Her2+++ and she doesn't want me to be on nothing. If the insurance company won't allow it I guess we will talk about removal of the ovaries.
Does anybody have any thoughts about this?
Thanks
Kris

[Barbara2]

Below your signature, you have not posted the details about your tumor, which is a good idea to do, as those "details" determine treatment, and it also helps others to help you more, by knowing your pathology.

But if your onc is thinking it may be in your best interest, I would DO IT!! But that is me; I believe in taking whatever is recommended if the doc feels it may help in the battle. I got herceptin 26 months past chemo, and was taking Arimidex at the same time. I could not be in the trial in 02 because of heart issues; info about the trial came out in the spring of 05, and my onc agreed to give me herceptin.

Below are some comments from Dr. Pegram on the topic of herceptin. I saw him in April of 07, and this is what he had to say about "late" herceptin. Good luck with your decision; we all know they are not easy to make.

How effective might “late” Herceptin be? (I received Herceptin 26 months after chemo due to SVT’s; a rapid heart rate.)
Good for you! I think that’s the right thing even though there’s no data. I think you definitely should do it. Can’t hurt. You have nothing to lose. We know that it works when you take it up front when first diagnosed. We also know that it works in terms of even prolonging survival if you wait until after you develop metastasis, it works, so what are the odds that it doesn’t work in between those 2. I’m sure it does. I think it works. I would have done it if I were you. There’s even a study of that right now (late Herceptin); there’s a trial that’s open …I think you have to have finished adjuvant therapy within 2 years. The study isn’t random; they’re treating everybody. The study is just underway, so it will take a long time for the results (and there are not that many people that would be taking the study; after May 05, everyone started getting Herceptin.)
Is there any thought about the possibility of “maintenance” Herceptin after, let’s say 5 years of NED early stage breast cancer, to keep the cancer from returning?No. One year should be enough. Now the issue is whether you need actually a whole year or not. There is some evidence that you may need as little as 9 weeks even, instead of a whole year. It was a small study. So now they’re doing 6 months vs. 12 months; if that shows no difference ultimately (which will take another few years to get those results) then people will start looking at like three months. But probably a year is plenty. That’s why I don’t recommend any more.

[Barbara2]

Should have mentioned that my insurance company did pay, but they were reluctant, at first. At that time, Herceptin was not yet used much by oncs outside of the trials, so we sent them a ton of information...still weren't going to pay.

Finally, the insurance company made a phone call to 2 doctors at the Mayo Clinic. After their visit, they agreed to pay for the Herceptin. I was reimbursed for the 8 (?) treatments that had been paid for by me.

Please let us know what you decide to do!