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Any suggestions? What happens now? What is this ?

 
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wifeholdingon
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Joined: 08 Sep 2005
Posts: 10
PostPosted: Thu Apr 20, 2006 9:45 am    Post subject: Any suggestions? What happens now? Reply with quote
My husband is 43 and was diagnosed with GBM Grade IV last May and had surgery to remove it. It was the size of a golf ball with tentacles on it in his left temporal lobe. Our surgeon told us it was a complete resection. After temodal and radiation another MRI was done and the tumor was back in the same place as before and almost the same size. We were sent to Duke. Duke said there is no such thing as a complete resection it was merely debulked? Sad They put him on trial of Avastin and CPT-11. In Nov. he was hospitalized for a pulmonary embolism that they say should have killed him. They are saying it came from the Avastin so that was stopped and CPT-11 continued now with blood thinner Cumidin addded. After several MRIs that were "stable" the tumor began to grow. It increased 25% in 6 weeks. So they changed his protocol to Tarceva and Rapamune. He had so many side effects with drug he was unable to tolerate it. The last MRI showed no growth of the tumor but increase in the swelling and edema around it. Now we wait to hear back from Duke. It's been almost 2 weeks since he has had any medication for the cancer - just an increase in Decadron the steroid for swelling. I asked about Gleevac because I have heard so many good things and was told that wasn't an option to Greg because of the blood clot. Does anyone have any ideas? I'm scared to wait and do nothing. To visit Gregs caringbridge site go to www.caringbridge.org/visit/gregjones. any help or encouragement would be so appreciated. I am hanging on.
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