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I am receiving herceptin off protocol. It took some doing to find a doctor in my area who would do it. I sort of lucked into it. I was calling all drs in the area to see if the were doing herceptin trials. When I talked to the nurse she said the were not, but the used herceptin all the time. I asked if they ever used it on non metestatic patients and she said she would ask. Called me back later that day and said they did on a case by case basis. Went in to see him and started tx the next day.
By coincidence the same day I received an email from someone in a local bc support group I had just joined. She also was her2 + and had received herceptin from this same dr with no mets, that was 2 yrs ago.
I would check with your local drs and with people in your local support groups(they have the best info about drs) Also my insurance is paying for my herceptin. My drs office did not precertify it--felt it was more likely to get denied this way. He felt he could make a case for giving it to me if he had to, and basically I was going to figure out a way to pay for it if he couldn't. hth
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