herceptin no mets 3 years after chemo

I completed my chemo 3 years ago and have no known mets. I would like to know if anyone has been able to get Herceptin off-label in a similar situation.
It is unlikely there will be a trial to prove the effectiveness in this situation since we are a declining number of patients. Those with mets get it and all newly diagnosed get it.
Thanks,
Joan

I'm 2 3/4 years out here. Based on the lack of response to my last post about it I have to agree with you. My onc hasn't contacted me about anything in regard to further treatment.

Whether or not other HER2's who are this far out and NED feel confident enough not to do further treatment, I personally feel very strongly that most of us should have access to it if we want it. I was told when I chose to do chemo that the chemotherapy that I had (CAF x 6) does not prolong survival, it only pushes back the onset and number of recurrences.

I believe this because there is some information demonstrating that micromets can be found in most Stage I's up to 4 years after completing treatment.

I also believe this because recently it has been estimated that 17% of breast cancer recurrences are diagnosed within 5 years. That leaves around 83% to be diagnosed after 5 years.

We may be a dwindling group but in my mind that is no reason to deny us treatment if we want it. I just wish enough of us were smart enough to be interested in a clinical trial to get one so that the treatment we might get would provide additional information instead of being a hit or miss effort for all of us.

I also don't think we are a SMALL group at this point, although we WILL be if they just leave us to get Herceptin when it is really too late to do much good.

Hi Alaska Angel, glad to hear you're doing well almost 3 years after your diagnosis--I am coming up on my 4-year anniversary of bc diagnosis with no recurrence..I did get one year of Herceptin after A/C and Taxol...anyway, I was curious about the statistic you mentioned that 17% of recurrences occur within the first 5 years, leaving 83% of recurrences happening more than 5 years after original diagnosis...I would be very interested to know where you got this information, as it is surprising to me and it goes against what I thought to be true--that MOST bc recurrences occur within 2-3 years after the initial treatment ends and that there is a significant drop-off after 5 years....I think this stat. is in the latest issue of CURE magazine...anyway, could you please share with us where you got this information??? Thanks, Audrey

Thanks for your responses.

I have heard of one oncologist who would like to do a trial, but can't get the funding. Also I think for some of us the trial might not be useful. It would take too long to get the reults to help us.

As I said before we are declining in number. Those who have mets get it, and those who are newly diagnosed get it. So there is this group of women moving thorough the life that is cancer survival who might benefit from it and who won't get it. Unless we can get any docs to prescribe off-label. Know any?

Funding is difficult to come by at the best of times and why fund a trial for a group of people who are descreasing in number.

Also with regard to recurrence rates, the stat I heard was 9% per year.

Hi Audrey and Joan,

Funding IS hard to get, but so is the availability of personal funding to pay for the Herceptin even if you can find an onc willing, and if resources are scarce it really makes more sense to demonstrate what the benefit is, particularly since there is also the question whether to do just Herceptin or combine it with a taxane.

The recurrence statistic I think was in a 2005 article, either Sloan-Kettering or Mayo Clinic, and I could find it again if need be. It applied to the general population of bc patients, so I know the percentage in the first 5 years is quite a bit higher in the HER2 positive population. Joan, do you remember where you saw the 9% per year?

Has ANYONE seen any online predictor for recurrence/survival that factors in HER2 yet along with ER/PR status and node status? Or are oncologists still too weak-kneed to be that honest with us?

AlaskaAngel

Hi there,

The stat I used was given to me by my oncologist.

Does anyone know of any other people in our situation? I really don't believe a trial is the answer.

The women who were in the control group of the study will receive it, I think. However since it isn't approved for women with no known mets and 6 months to a year beyond initial treatment, we aren't going to be offered it regardless of who pays.

If there are enough of us and we start to lobby, do you think we could be offered it?

Who do we lobby?

Joan