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Old 09-07-2006, 04:30 PM   #1
hope
Senior Member
 
Join Date: Sep 2005
Posts: 38
Unhappy doctors have given up on me

Well I'm still not doing well. My right lung tumors are still progressing and I am on chemo. I take a low dose Xeloda (1500mg/day) due to severe side effects of Xeloda, weekly Herceptin, and Zometa. I have a exteme fatigue and shortness of breath eventhogh I am on oxygen but my oxygen saturation is always around 98-100% left lung remains clear. I recently got a plurex catheter drain in my right lung to help with my plural effusion before that I was going to the pulmonologist every 10 days to drain 1.5 L of fluid so the catheter has helped that somewhat. I am currently approved for the EAP study of Lapatinib but it is tied up in the clinical trials office at my cancer center waiting to be approved. Last I heard that it would go to the regulatory affairs committee next week for approval but won't be able to dispense until end of Sept. They all know at the cancer center I go to that I am waiting for this drug and this is my last chemo I can take as I failed every chemo approved for metastatic breast cancer and my oncologist will not repeat chemos or use chemos off lable.

So the problem right now lies with my oncologist. My onc. said that I can take my chemo or not its my choice. They do not know what to do at this point until I can get on Lapatinib. I would like to know what you would do in this situation? Do I contiue my chemo or not. Obviously my chemo is not working but I can't understand why my onc is leaving this up to me. I am not a doctor! I am still fighting for my life and my onc knows about this. Also my liver enzymes (AST,ALT and Alkaline phos) are increasing from 30 to 126 (AST), 39 to 70 (ALT) and 157 to 489 (Alkaline phos) in the last two weeks. These are big increases to me yet they refuse to give me a ultrsound on my liver so I don't know whats going on there. I haven't had any liver metastasis. If worse comes to worse I can change oncologists but I am very weak now and to do that is lot of work and it might even jepordize me getting Lapatinib on the EAP program. Thanks for letting me vent. Hope
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Dx in Oct. 2002 Her3+++(at dx) ER/PR neg. stage 4 with mets to lung, bones, and brain
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