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Its good to hear from you all! Wish it was under different circumstance!! March 2001 My tumor was 5.5 cm. with extensive lympovascular, dermis and epidermis invasion. I had 44 pos. nodes out of 45. I had adm/taxatere for 4 cycles. Double mastectomy (my choice because of high risk of it going into other breast as it is so aggressive, and it being a lymphathic disease) I was also told that clear margins not obtainable with IBC because it is a lymphatic disease. I only had 5 radiations because of skin mets from dermal invasion. Went back into chemo with Herceptin and Taxol for 3 months. Skin mets cleaned up nicely but we knew they would pop up again. Stayed on weekly Herceptin. Skin mets popped up 7 months later. Went on Navalbine for 6 weekly treatments did not work tried Xeloda for 2 cycles this did not work. Went back on Taxol and added carboplatin for 2 cycles (12 tx.) Skin mets gone again. It appeared that Taxol is my miracle drug. 4 months later skin mets again. Back on taxol and carboplatin still with the Herceptin for 2 cycles. 2 months later a spot on the scar line used Miltex from Germany and was able to keep stable for 10 months and now finishing up another round of Taxol without the carboplatin. Skin clearing up nicely again. Will be looking at other options as the neuropathy is catching up in my hands and feet. So this is what its been for me for the 4 1/2 years. I was told I had a very short time to live when I started out with this. Lots has changed with this disease and now its not a death threat like it was 4 1/2 years ago. It is treated as a chronic illness. As for the Herceptin we feel it has kept it out of my organs and bones. I do lots of supplements and self help for my immune system. Well wishes to you all. I am always happy to stay in touch with IBC'ers. hugs to all you strong people. Like a doctor told me once we IBC'ers are a different breed of cats!! I thought at the time that was rude but know I realize he is right. Sandy
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