bc survivors who have never had Herceptin

[AlaskaAngel]

1/3 of the women with bc detected have been HER2+. So is there going to be any formal discussion at all among oncs about the rather large group of bc survivors who have not had recurrence but finished chemo too soon to share in the combination treatment with herceptin?

So far I haven't seen even a vague discussion about any future clinical trials to document either the usefulness or lack of it for these survivors is even being contemplated by this convention of oncologists. Is there some valid reason for the silence about this?

I'm sure it takes time to analyze the data completely, but all of these oncs are going to have to answer that kind of question as soon as they pick up their phone.

As I understand it, the clinical trials involved were not based on that patient population, so waiting for a complete analysis of the data just puts off any documented solutions that would apply to that patient population.

AlaskaAngel

[Fontaine]

I think the dialogue has been goin on for a while. My concologist put me on Herceptin my first time w/ bc because I was HER-2 positive but stopped it when my insurance company was unwilling to pay for it. (Although he didn't explain to me or I'd have raised bloody hell with them!)

Too often, doctors don't explain things to us that we want explained. I assume this is, at least in part, because many or maybe most patients, aren't really interested in knowing or understanding. But I'm sure there are any number of other reasons, too.

My point is that many doctors have been using Herceptin outside of clinical studies for early stage HER-2 positive patients. Perhaps the fact that up until now, many would not pay for it, explains why they didn't give it more often.

I hope I understood your question properly. If you had breast cancer before and are HER-2 positive but didn't get Herceptin when you got chemo, even though you've not yet had a recurrence (and hopefully, won't), I'd bug the hell out of your oncologist to give it to you now so that, hopefully, you won't get a recurrence.

I think we have to be VERY proactive in our treatment else we can far too easily fall through the cracks. Personally, I think this is why a lot of patients die--they hand over their will to survive to others. I don't think it works that way from what I've been learning (bc research and courses I'm taking). Or that's my theory at present.

[imported_Joe]

AA and Fountaine,

The results presented at ASCO were very preliminary BUT will encourage the oncologists to revisit Herceptin treatments in advance of a change in the FDA protocol.

I don't feel than clinical trials in this area are warranted as by the time the trials would be over it would be a non-issue. By then Herceptin by then will be FDA approved for adjuvant treatment.

Lets face it, there are several major medical and oncology seminars held yearly. I am sure that the progress of the clinical trials were discussed unofficially among the various oncologists attending these meetings. This information swayed many oncologists to prescribe Herceptin "off label" and we all are grateful for them doing this.

Also, approval from the FDA will in fact force coverage from the insurance companies.

[AlaskaAngel]

Hi Joe,

I think we are talking about 2 different things. You are talking I think about people who have completed treatment in the past and have not had recurrence being offered Herceptin alone by their oncologists (which in these trials was demonstrated to be much less effective then when being offered with chemo). I am talking about moving toward trials that would indicate whether people who have completed chemo would benefit from being offered combination chemo simultaneously with Herceptin.

I suspect you are correct; that no one is discussing offering simultaneous chemo and Herceptin to those who have gone through the chemo regimens in the past that are known to be far less effective. Am I correct?

? Is there a reason why?

A.A.

[Christine MH]

Hi Alaska Angel,

I suppose the reason is the risks involved. Most HER2+ women will have had anthracycline chemo, but the 52% reduction was found among women who had AC chemo followed by a taxol and even then there were concerns raised about the incidence of heart problems. Oncologists may worry that if they gave patients AC again they would do alot more harm than given patients herceptin by itself.

[AlaskaAngel]

Well, wouldn't any adriamycin history may be helpful in a small way, in that if the heart stayed strong with completion of the original doxycycline that is an indicator of sorts, along with any "lifetime limit" or cumulative amount of Adriamycin one should have. And a MUGA or echo now could help too.

I'm sure it isn't as simple as I'd like to believe it is, but what I find so sad is the lack of any open discussion about early-stage survivors who have not yet recurred after doing chemo, since the whole idea behind the Herceptin clinical trials is to find a way to effectively reduce recurrence in early-stage bc survivors.

There are a pile of people that I can see who might benefit from such a discussion:

1) Those who weren't tested for HER2

2) Those whose chemo didn't include Adriamycin even though they were HER2+ (if they weren't avoiding Adriamycin because of serious heart problems)

3) Those who chose not to do chemo at all based on no improvement in survival

4) Those who are at the most risky edge of "early stage" and whose heart looks fine on MUGA or echo

If "no more than 6 months out" applies I hope someone here can provide a more complete explanation.

A.A.

[Lyn]

Hi there, we had breaking news here in Australia last week that a new drug Herceptin has made it possible for 47% of women having Herceptin will live longer than those that can't or don't, can't understand why Kylie Minogue is having treatiment here when we are sooooo far behind. I have been on it for almost 3 years if not longer so I am proof of that statistic because in 98 I was given 2-3 years, go figure. When I went on it my onc had only heard the negative side so I had to confince him and as it happened I was Her3 strongly positive and still the only one at our hospital on it, despite 100's being tested.


Love & Hugs Lyn