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Hi Martha: I was Dx. with IBC 03/01 had Adm/Taxatere then radical Rt mastectomy with graft to chest wall because it was in the skin. I also had a simple Lt mastectomy (I chose a double mastectomy because my risk was high for it to go into left breast). Before the graft was healed it took 9 weeks I had skin mets. I had 44 positive nodes out of 45! I could not have radiation because of the skin mets being resistent to it. I had 5 treatments of Herceptin and Taxol following surgery. It worked great for me and cleared skin mets all up. Five months later had recurrence of skin mets and was on Miltex (a topical solution from Germany) for 12 weeks. It didn't do the trick like we wanted and I got some bad burns, so back on Herceptin, Taxol and carboplatin have 3 more treatments (2 cycles of 12 treatments)to go then will have skin biopsies to see if its all gone. I have done well considering my prognosis at the beginning. I asked my doctor Friday about exemestene and he said its not for me because I am ER/PR negative. Because I was negative I was limited on the drugs available for me. None of the hormonal drugs will work. I am doing well at this time so never give up. I have had times it didn't look good and never thought I would still be here and doing this well. Maybe, you need another opinion. I will keep you in my prayers. Hugs, Sandy
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