CancerCompass message board discussion started by VWWLI on 4/10/2008 http://www.cancercompass.com/message-board/message/all,22943,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I just found this site and I am very excited to start reading what everyone is talking about.  I wanted to encourage people to try and not give up.  This is a devastating disease for the whole family and friends.  I hope my husband's journey so far might help someone.  My husband was diagnosed with a GBM  in his right front lobe 4-1/2 years ago.  He had to crainiotomies in 36 hours and had 2 strokes during the surgeries which effected his eyesight. He doesn't see very well and wears sunglasses in the house. We were told he wouldn't make it through the end of the week. He also developed Hydrocephelus 2 months later and a blood clot in his lung.  After all this he did radiation and then 16 rounds of Temodar.  The cancer disappeared for 1 year and then recurred.  He then went on Avastin/CPT 11 through a clinical trial.   After 6 months he was so sick from the CPT 11 that he stopped it but they kept him on the Avastin for an additional 11 months for a total Avastin trial of 16 months.  He developed high blood pressure when he went off the CPT 11 and almost had to stop the Avastin.  We eventually got it under control with 3 high blood pressure medicines.  We are now slowly weaning him off.  It took over 4 years to get him off the decadron but we never stopped trying with the help of his doctors.I don't know what will happen next but I am glad he has kept fighting so far because  I think he will get to see our last child graduate from High School in June.   VWWLI Thu, 10 Apr 2008 00:00:00 GMT Great story. Thanks for sharing your husbands long term battle and survival. Seems he's been thru the ringer! We've had a few long timers here the past couple of days. What a joy to know it can be done. mbg53 Fri, 11 Apr 2008 00:00:00 GMT Prayers and good thoughts for you and your husband. I pray he makes it to see his child graduate as well. I was Dx with GBM IV June 2007. 2 craniotomies and I am now on Avastin every 2 weeks. Like your husband, my BP has shot up and lusinupril isn't doing the trick. I see oncologist Mon so I will ask him about this. I have been so very lucky though. No seizures at all. Tell hubby to hang in there.   texasbelle5 Sat, 12 Apr 2008 00:00:00 GMT Dear Texasbelle 5 My husband takes 40 mg Lisinopril10 mg Norvascand 37.5/25TB Triam Tiene/Hetz.It worked for himI hope this helps. VWWLI Thu, 17 Apr 2008 00:00:00 GMT