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Old 04-22-2005, 04:59 PM   #1
Laurie S
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I was diagnosed with stage 2 Her2 + a month ago and have started chemo of 4 x AC & then 4 x taxol. I also wanted to use Herceptin and My onc is considering it, saying that it would be using it "off label" and there are no early indications from studies that it is useful in early stage cancers. I am wondering if someone else has used it "off label" in an early stage and if so, has it "worked?" ie- no recurrence? Thanks
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Old 04-22-2005, 09:20 PM   #2
Rozebud
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I've used it as part of a clinical trial. No recurrances yet, but I'm still on it. I know several women who have gotten it off label with no recurrances, and others that have had them. I think the jury is officially out, but I believe it will add to survivability and decrease recurrance risk for early stage breast cancer.
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Old 04-23-2005, 05:50 PM   #3
*_jeff_*
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Hey Laurie,

Sorry you have to be here but you've come to a good place for help. My partner, Rachel, did a year of off label herceptin in the Boston area-- She was stage IIb at diagnosis, did dose dense chemo (ac +taxol but if we knew then what we know now we might have asked for taxotere instead) and then had to switch oncs to find one who was willing to do the herceptin.


Your onc is right, strictly that there is no early evidence released from the aduvant trials of herceptin yet (there might be before long--this year's ASCO in May or SABSC in December are good bets). The trials have very strict guidelines about when info can be released.

But there is evidence from some neoadjuvant trials done at MD Anderson and Dana Farber (neoadjuvant just means chemo before surgery) that indicate herceptin will have use in early stage breast cancer. If you go to the online journal breastcancerupdate.com and click on the current issue for medical oncologists and read Neal Love's Introductory statement ("Overture") it becomes clear that most research oncologists seem clear that the adjuvant trials will come out positive. I've been reading that opinion everywhere in the past months--even from relatively conservative docs like Harold Burstein at Dana Farber who almost laughed us out of his offfice when we asked him about herceptin off label a couple of summers ago. Now he's clearly indicating that herceptin use is going to make her2+ and her2- breast cancer two different diseases as far as treatment goes.

Herceptin has minimal risks. With early monitoring of LVEF (heart strength, basically) there is little to worry about. I hope you'll push your onc.

Feel free to email me (melnick@babson.edu) if you have any questions.

Good luck,
Jeff
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