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I was diagnosed in March of '04. I am her2 positive. After surgeries, while going through chemo, I asked my onc. why she was not giving me herceptin. She said that at the time the studies and trials were still in progress and that the risk of cardiac involvement was not yet clearly understood in terms of effectiveness vs. cardiac risk. So I said-- okie dokie then, your the expert !!
Well wouldn't you know 8-9 months after I finished standard chemo, in late April early May of this year, the very positive results of the trials showed how beneficial herceptin was for her2 people. At the time there was discussion about -- would it still be effective if one had been out of standard chemo more than 6 months. I was 8-9 months out, so she had some questions about that which she posed to a well known reseacher at Dana Farber in Boston. She consulted with him and his only reply was that they were using 6 months as a " cut-off" point. That brought up more discussion and the decision was basically left up to me, whether I would go on it or not. My decision was yes and started in June of this year-- every 3 weeks. Since then I've read on this and other sites that people who have been out of standard chemo for as long as 2 years are getting calls for their oncs. saying, " let's get you on it ".
The fact of the matter is- no one seems to know for certain, even the reseachers. So if I were you, I would advocate very strongly that you receive it, however that needs to take place.
I have felt such comfort in the fact that it was available to me and I decided to go with it.
Good luck in your efforts and keep me posted ( so to speak)
Carol
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