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Linda and Lisa: I certainly, can relate to your frustration. I went to bed crying one night I was so frustrated, along with hurting from the skin mets. I felt like no one cared about me!! There this drug was suppose to be there for us and yet here I was waiting, waiting and still waiting. I sent my oncologist an e-mail(I never e-mail him) sharing my frustration. He assured me he was doing all he could be get it through. The paperwork is the problem. Then I had a call from our dear Christine here. That lifted my spirits at least someone cared! I really knew they did but you both and others know what it is like to wait. I finally let it out to the Data Manager nurse when she kept saying she understood and I told her "no she did not because unless that person walks in our shoes-no they don't understand". I was not a nice person for a couple of days to her as I was not only frustrated but angry. I told her in 9 weeks of waiting people loose this battle. When we are first diagnose with an aggressive disease such as this one we are rushed into getting scans done, chemo started and surgery. Yet, now we wait and wait. This gives me a mixed message here that I don't like. Well, things started happening fast after that. She told me several times during signing of all the papers(about 20 of them) I could my point across very well! I told her this disease made me that way its called fighting for your life. She said again, "yes, you can get your point across"! I told her only if I really have to. I have been praying for you both and I check this board every night and morning looking for your post saying, "you have it" Sending you both a big hug, and more prayers to help you hang in there. Sandy
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Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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