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Dear Shell,
I'm so sorry to hear about your METS, your story is so similar to mine it's scary. I felt like I was reading my own story. I am basically in your shoes, only I was diagnosed in May of 03 @ stage TIIIB, my initial tumor was 11cm big, they said it looked like a softball that 's how big it was.
Anyway, I have had the exact same mets at around the exact same times as you, I have Inflammatory Breast Cancer. When the nodules in lungs and mets in nodes under arms became active again back in Sept. 04, I was put into a study with a drug called GW572016 (just recently named Lapatinib). Since on the drug I had tumor reduction with a couple small ones gone completely, the nodes under arms shrunk and were no longer palpable. I have no side effects other than irritation in my mouth if I eat salty or citrus foods so I stay away from them.
In the arm of the study that I'm in, I do the Lapatinib along with weekly doses of Herceptin. So far so good but I was sick with Cellulitis to my arm due to Lymphedema twice in the past month and a half. I was put on super duper antibiotics and just the other day started to notice that weird feeling you get uder your arms when the cancer is on the move again, you mentioned feeling something different in your letter also. It's hard to explain but I know you know what I mean. Anyway, I'm not due for scans til June 17th but the doctors said I can have them sooner than that if I'm scared about what I'm feeling, they always let me lead them when I have them weird feelings. So, I'm going to wait till this Thursday and let them examine me and we'll go from there. Wish me luck, I'm praying the study drug is still working! If it's not, I also will have to look for something new like you.
Oh, by the way, after I had the mets to nodes before it reached lungs, they put me on Xeloda with Herceptin, and that bought me 9 months with no mets, no side effects, wish it had worked longer but I'm grateful for the time it bought me. Feel free to email me if you'd like to talk, I'd love to keep in touch since we're in the same boat. I'll keep you posted on here as well.
God Bless, Martha
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