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Reply from Andrea
Dear Chelee, Thank you so much for your response. Just making contact with someone who gets it feels wonderful. I was diagnosed in '95 (with 4th stage invasive lobular carcinoma and 2 lymph nodes involved). Had mastectomy, 4 Adrymiacin and 8 CMF. In '98 it metastasized in my liver (multiple sites). Taxotere from Sept. '98 thru May '99. Herceptin from Nov. '98 -- to today. THE RED BLOOD CELL COUNT DIPPING HAS NOT CHANGED. A 300 mg shot of Aranesp keeps my head above water for about 3 mnths, then I begin dipping again. My doc calls it chem-induced anemia. I know I'm not on chemo -- am on a monoclonal antibody -- but that is what he writes in my chart. Still, Medicare, and most insurance cos, have decided not to cover the $7,000 injection for NON-CHEMO patients. I do remember when the outrageous cost was $1,000-$1,200 for the injection. Aranesp is cheaper than Procrit and, as it is, the former lasts longer -- FOR ME!
I am going to call my doc (who was away last Thurs when I came in for Herceptin, as I do every 3 wks, for my triple dosage). I want to know if he will fight for me. He has many patients just like me -- on Herceptin only. I want to know if it's just me that has this plummeting of red blood cell counts.
I think it is GREAT that your boby came back to itself, and in months, rectified the problem! Good for you! I really mean that. Your immune system is doing it's job, and that's the best of news. They have run every kind of blood test on me, trying to figure out a reason for my unsteady hemoglobin counts. They can find nothing! And all I know is that summoning the strength to get up and get dressed wipes me out. EXCEPT when I get the injection -- and I'm "perky". Soon I fall back into the valley, but while I'm "normal", I feel like I'm skipping along. Glowing.
I am grateful with each an every day for beating the odds and being here altogether. Here to greet 5 grandchildren! I feel lucky. I feel truly blessed. I say THANK YOU every single day. And I monitor my every thought to keep worries and fears to a minimum. I don't repress them. I experience them and toss them like a live grenade. I know that WHAT I THINK ALL DAY WILL DETERMINE MY FATE -- so I live full of love, joy and harmony. But, this new kink is annoying the heck out of me. I feel forgotten. With no voice to speak for those who are NON-CHEMO patients. I am a Survivor and a Warrior, but somehow got separated from the pack!
Thank you sooooooooo much for your support and your caring. Please keep in touch.
ANDREA
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