Herceptin More than 12 Months Out Revisited

I recently posted a question about Herceptin for those of us more than 12 months out of treatment and who are NED. I appreciate the great responses.

My background: diagnosed 9/03, 4 nodes +, ER+/PR+, Her2 +++, 6 cycles CAF completed 4/04, radiation completed 7/04, Walter Reed vaccine therapy graduate, arimidex (after ovary removal).

I just had a PET/CT scan this week and all is well.

I have received two entirely different opinions from two oncologists I consulted about getting Herceptin at this stage of the game. Hence, I would like any input you may have to offer

Onc. #1: Don't do it. She said that the trial showed a great benefit for Herceptin in combination with Taxol (approx. 56%), but less of a benefit (approx. 14%) when given after Taxol. Given that I didn't have Taxol at all, and that I am so far out of chemo, there is no evidence how Herceptin would work. (Christine, you have said that the HERA trial showed the best benefit is for those who received a CAF type regiment -- I would love to see what is written on that so I can show it to this onc.) She said that the heart problem rate in the trial was 4%, whereas it is nowhere near that high for mets patients. I asked why and she said they don't know though they think it may have to do with the closer proximity of Herceptin and Adriamycin used in the early stage trial). Bottom line, she said you have to do a risk v. benefit analysis. She said that if you compare a 4% heart risk against a wholly unknown benefit that is probably 14% at best, it makes little sense to proceed. Also, because I am this far out from chemo with the statistics in my favor of being NED, why risk that level of heart harm when there is a good chance I am cured. She said that if the treatments were successful (big IF), there is no cancer left and thus nothing for the Herceptin to do other than possibly damage my heart.

Onc. #2: Go for it. He said that since there is a clinical benefit for those who did receive Herceptin according to protocol, he believes, in the absence of data, that I may well get some benefit even one year out. Thus, he is willing to give it to.

So here is the quandry: Is it reckless to pump drugs into us never been Herceptin studied gals without any actual data of benefit but with known data of a potentially lethal heart risk.

I know that this is an issue of great concern to many of us, so I would greatly appreciate your input and a report on what you are hearing from your oncologists and others.

Thank you so very much,

Cynthia