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Old 10-23-2005, 07:54 PM   #21
Her2neu-bie
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Hi Pat, thanks for the welcome! Well, Wilma has cancelled my appt. for Monday so I'm not sure when I will get in. I will call this week and see if I can at least talk to her...there really is no reason why she actually needs to see me to tell me what she found out.

Dr Susan Love is a bit controversial...I'm not sure how much store I would put in her comment. You have to do what you feel is best. And why couldn't there be any cells floating around? If they are there 6 months after chemo then why not a couple of years later? People DO recur many years later..........

Linda R.
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Old 10-24-2005, 08:52 AM   #22
Barbara2
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I was diagnosed in 09/02 Stage 2B. Finished CEF 03/03. Still NED. Chose "late" Herceptin, May 05 (the 52 week plan). Having never had Taxol, I still may add it to the Herceptin. Have no regrets. Don't want to live with the hindsight of mets,
then wondering if Herceptin would have kept it away.
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Old 10-24-2005, 12:35 PM   #23
Lolly
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Drug Resistance?

I posted earlier in this thread regarding worries that Herceptin for early stage bc would set the stage for possible Herceptin resistance later on if one had recurrence. I found the reference I was looking for, in an web chat forum involving breast cancer experts, including Susan Love among others. Following is the pertinant excerpt, and the link if anyone wants to read the whole chat.
Bold emphasis is mine

http:/www.susanlovemd.org/chat_frames_040914.html

Joyce O'Shaughnessy MD:"...With all of our other treatments against breast cancer, whether chemotherapy or hormonal therapy, when cancer progresses through that treatment, we stop that treatment. Importantly, we may come back if that treatment had initially been effective. If we can take that woman off that particular agent for at least a year, then there's a reasonable chance (though not as high as the first time) that that woman may benefit again from that agent, particularly if it's been 2-3 years since the breast cancer has seen that treatment. If it's initially effective, there's a reasonable change it will be effective again.

Susan Love MD Do you think the cells just recuperate?

Joyce O'Shaughnessy MD Yes. There's evidence that you can see new areas of chromosomes under the microscope by special staining when cells become drug resistant. When you take the chemotherapy drug away, those new areas of the chromosomes disappear over time. The cells can forget they became resistant. We definitely see that. So we don't know if Herceptin is in the same category. There are laboratory studies that suggest that even though the cancer cells can be growing through the Herceptin, there's a braking phenomenon, meaning that they aren't growing quite as fast, they can be seen slowing them down even though they're not killing them. That can be seen in the laboratory, but we don't have any data in women.

My own personal opinion based on clinical observations is to give woman long breaks off the Herceptin by offering her hormonal therapy if her breast cancer is ER positive. I might use Xeloda, for example, by itself. It's just a pill, women can tolerate it and get great responses from it, and then I might use Herceptin and Taxotere. And if the cancer progresses, I might stop both and use Xeloda by itself, and a lot of times it works and the woman may be off intravenous drugs for a year or so. And if the woman is doing well and her disease progresses, I might offer her participation in a clinical trial. I like to try to get her off the Herceptin if I can for a year or more because I have anecdotal experience of coming back later on with the combination of Herceptin with either Gemzar or Taxol or Navelbine. I've had some women do very well all over again. I don't have reason in my own practice to think Herceptin is that different from any of the other chemotherapy or hormonal drugs. Once the cancer has progressed, I haven't seen any benefit to patients from continuing the Herceptin. But this is just conjecture on my part because we don't have data..."
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Old 10-25-2005, 04:58 AM   #24
PatS
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Thanks, Lolly, for taking the time to look up that info. It does make me feel
better about the resistence issue!

Pat
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Old 10-25-2005, 10:39 PM   #25
AlaskaAngel
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Late Herceptin Logic

Thank you for sharing the reply from Dr. Love. When no one wanted to listen, she was willing to speak out about the dangers of estrogen and I haven't forgotten that in the least. Her viewpoint on Herceptin is meaningful to me and I would like to hear more from her about it.

I had another discussion with my onc about having Herceptin as a "3 years out, NED, Stage 1, HER2+++, node-negative, under 2 cm".

Both of us are fine with the idea that I will have Herceptin if I want it, since my heart did fine with the Adriamycin I had for chemo, and my local doc and I will be keeping an eye on that as time passes.

I have the estimates about my personal risk based on my cancer characteristics with the use of Adjuvant! But the estimates on Adjuvant! do not include whatever increased risk is there for anyone who is HER2 positive. Being tested for HER2 has just recently become standard, so it is going to take a while before something like Adjuvant! will also include one's risk with HER2 positive status.

But a rough guess by my onc as to how much risk being HER2+++ adds in my case would be around 5% -- and I think he knows what he is talking about.

I am quite chemophobic, yet I did chemo to get less percentage of potential benefit, even though there was no more certainty that it would "work" to avoid recurrence or mets than there is that Herceptin will "work" for me. Considering how opposed I am to chemotherapy, and considering just how much I gave up by doing chemo, it is baffling to me how anyone could justify recommending chemotherapy that includes Adriamycin for a Stage 1, HER2+++, node-negative, under-2-cm breast cancer patient and then be reluctant to allow that same patient to have Herceptin to try to continue to have any possible advantage. I'm happy that my onc is okay about letting me add "late" Herceptin.

I have heard over and over that "most HER2's who are going to recur, recur early on" (i.e., in the first year or so). But it seems logical to me that because general testing for HER2 has been pretty erratic until this year, the data is not reliable enough to generalize about early or late HER2 recurrence/mets any more than Adjuvant would be willing to generalize about including the risk of being HER2+++.

I also think that the use of SERMs like tamoxifen as well as the use of the aromatase inhibitors can muddy the statistics and mask or delay just how far out a HER2+++ who happens to be hormone-receptor positive might end up recurring, since resistance to tamoxifen and the AI's invariably does happen.

I also think it is significant that Adjuvant! only predicts up to 10 years out. If those who set up Adjuvant had more definite knowledge about who recurs after 10 years out and who doesn't, I think Adjuvant! would not stop at 10 years.

I am glad I kept my port in.

Because Herceptin is expensive, I asked about whether there would be any useful information gained by retesting my tumor specimen. The answer was not straightforward and I don't feel the question was given consideration. I feel it was a logical question and deserved further explanation that was not given to me. I also am uncertain about whether my tumor specimen should be tested by FISH before the money is spent for me to have Herceptin, since it was only tested originally by IHC.

I did discuss with my onc whether or not there would be any advantage in doing a taxane with Herceptin. The response I got was logical to me. Basically the majority of the huge advantage with the taxane that was demonstrated in the clinical trials is that it mainly worked for hormone receptor negative participants, or participants who are only minimally ER+ or PR+. So as an ER+/PR+ myself it probably would not do much for me, and might be more damaging than helpful. I hope I have succeeded in explaining in simple terms some of the things that can be so confusing.

AlaskaAngel
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Old 10-26-2005, 05:14 AM   #26
PatS
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A.A. -

Thanks for your response, I know you've been thinking a lot about this and appreciate your input. I did ask Dr. Love why she wouldn't recommend herceptin now and she said,"There is no data to suggest that it will do any good at this point. It is not without side effects, the biggest being heart failure."
While I understand that point, when I originally asked about Herceptin after I finished rads my onc. wouldn't give it off label and from reading info from other sources the common theme was it shouldn't be done outside clinical trial. I wish I had pushed harder for it back then. I also have to check to see if insurance will pay for at this point.

Pat
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