Going Off Protocol

I was dx last December with cancer in both breasts, HER 3+, 2 of 6 lymph nodes positive, the other breast was in-situ. In order for me to participate in the herceptin trial I would have to get a mastectomy on one of my breasts. I'm thinking about going off protocol. I was hoping you could tell me how much does herceptin cost per treatment off protocol, and how does one find an oncologist who will give it? I live in New Jersey, an hour from Manhattan. How many of you are taking herceptin off protocol?
Thanks so much!

Hi Monica,

From a bunch of posting I did all over the place last year on behalf of my partner, Rachel, I found a good number of women who were receiving Herceptin off protocol. Email me at melnick@babson.edu and I'll be glad to tell you what I learned. Even the names of some doctors around (including perhaps one in NJ) who might be willing to do herceptin off protocol...

Best,
Jeff

Hi Monica, Jeff emailed me about your situation.
If you would like to email me at etinn@optonline.net I can certainly offer you info.

Dear Monica,
It sounds as though you are not keen to have mastectomy at all. Have I assumed correctly? It may be wisest to give that issue more thought. Having the tumour and the diseased breast(s)removed may be a way of providing you with the best chance for a positive outcome, as well as being an "easy" way of slotting into well established protocols, while also saving you money and angst. I have had bilateral mastectomies, and am very relieved to be without them. But it is so hard trying to make so many decisions while also feeling stressed and confused. It's a really steep learning curve, but the decisions you make now may make all the difference to your long term well being.
Good luck with it all,
Vicki

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