Ibc

[Sandy H]

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

[sherri]

Dear all,

I don't know if I had IBC or locally advanced BC, I think IBC . My onc never accepted to be IBC, but other Doctors called it IBC. In October 2005 I had a red spot on my left breast (like a mosquito bite) which started to grow. In December 2005 I had mam., which showed some calcifications, but Ultra sound showed several tumors, The biopsy showed Invasive Ductal Carcinoma, several tumors the biggest 2.1 cm high grade Intraductal Carcinoma, venous or lymphatic space invasion, multiple vessels involved including dermal lymphatics, pr- er- Her2 +++. I started chemo a week after, AC+ Taxotere for 6 cycles dose dence every 2 weeks, all the tumors were gone with chemo but skin was showings cancer cells. 10 days after the last chemo, I had a simple mastectomy, the result was clear margin, no evidence of residual invasive or in Situ Ductal Carcinoma, but extensive involvement residual intralymphatic high grade ductal carcinoma. After a month I started rads for 20 sessions. At the same time I started Herceptin every 3 weeks. I'm NED now and I hope it never comes back again.
I think if you have good result with chemo, surgery and radiation, stay away from more chemo. More does not mean better. I think the less drug we take, it's better for our bodies. I like to be in touch with all of you; we can learn so much from each others.
LiveStrong.