Hi, Inflamatory breast cancer , right breast.On July 4th I saw the red thing on my breast, Thank God I could see it because I never did self exams and didn't have insurance to go get checkups. So started my journey I thought would just take maybe a year but Christmas eve my doctor said he had good news/ bad news.The good was I could live a very long time cancer free with this New drug but I had to have chemo again, I am doing radaition now and have had chemo and a mastectomy...anyway chemo again and again my hair will come out, not that I have any now. But after 3 months of chemo I will have an IV treatment of something for the rest os my life. I kinda don't remember anything he said after that except the Her2/nue. So I have been doing some looking and found you all. Help!!

I go back to see that doctor in a month.
Thanks
Sandra

i also have ibc and am her2 neu positive.

i was diagnosed 10/99.

The drug you are wondering about is herceptin which i have been on since jun 2000, i take it once a week for a 30 minute infusion.
good luck

beth

Hi Sandra,
I don't have IBC, but am on Herceptin for BC for the rest of my life. I find it very tolerable, the first 6 months it was given in combo with Navelbine, which did cause some side effects, but after I went into remission the Navelbine was dropped and I have continued on Herceptin only, going into my 3rd year now. You've found a great resource here, check out the Home page by clicking on "Return to HER2 Support Group" above, many great links to lifesaving information.
Lolly