CancerCompass message board discussion started by Shevy on 4/11/2008 http://www.cancercompass.com/message-board/message/all,22954,0.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/ Hi All,My son, 13, was diagnosed with GBM in May. He had radiation therapy, was on temodar and last on Avastin/CPT11. There was significant regression of tumor during the last 7 mos. Our last MRI showed new progression. As a last resort, we are offered the 5-drug regimen from Dana Farber in Boston(Phase 2 trial), or  Enzastaurin or LY Compound  (Phase2) at Washington,DC. Does anyone have any knowledge regarding these trials? Can anyone throw us a lifeline? What about the scorpion venom from Mexico someone mentioned?Thank you so much,Shevy   Shevy Fri, 11 Apr 2008 00:00:00 GMT ShevyI wish I had some information I could share with you.  This disease is so difficult, but when it is visited upon children & their families it is beyond comprehension.  I have been riding this rollercoaster with my husband since last January & that is bad enough.  I pray the drugs you mentioned are the miracle we are all waiting for.  My best to you.Jackiekay jackiekay Fri, 11 Apr 2008 00:00:00 GMT You could try looking into a drug called Celingitide manufactured by Merck.  It's entering final stages of trials and apparently is showing promising results for recurrent GBM.I know of a Dr Helen Wheeler at North Sydney hospital who is currently using  it with patients.  It seems many of the clinical trials have been conducted in Europe.  Notdoneyet Mon, 14 Apr 2008 00:00:00 GMT hi there my mum is about to start cilengitde next week with Dr Helen Wheeler. I will keep you posted on how she goes with this. Also if any one has any good results please let me know. Oh what side effects can we expect - if any (mum had none from avastin)CheersGilda Gilda1981 Sun, 20 Jul 2008 00:00:00 GMT  On 4/11/2008 Shevy wrote:Hi All,My son, 13, was diagnosed with GBM in May. He had radiation therapy, was on temodar and last on Avastin/CPT11. There was significant regression of tumor during the last 7 mos. Our last MRI showed new progression. As a last resort, we are offered the 5-drug regimen from Dana Farber in Boston(Phase 2 trial), or  Enzastaurin or LY Compound  (Phase2) at Washington,DC. Does anyone have any knowledge regarding these trials? Can anyone throw us a lifeline? What about the scorpion venom from Mexico someone mentioned?Thank you so much,Shevy   Hello! My son is 15 and he was diagnosed with GBM May-06. He is currently taking Tarceva and is enrolled in a study for the drug. The study is for three years where he is administered 125 mgs daily. We just returned from St Jude two days ago, no sign of growth. We are however experiencing a few difficulties due to the area of the brain the tumor was removed. The right temporal lobe. My heart goes out to you. Kaleb was just 12 when he first became sick. He was this perfect innocent child. I appreciate the time we have. But I find myself bitter that this disease found it's way into his life. No one should ever go through this, especially not our children.  Kalebsmom Sat, 20 Sep 2008 00:00:00 GMT Thank you for your reply. Unfortunately, my son passed away in June. You are very fortunate. Enjoy every minute with him and accept the difficulties. I am glad to hear that tarceva is working for him. I will forward this information to others with GBM.  Since I was involved in researches, people turn to me for help. Please keep me posted. My prayers and blessings to you and your family,Keep strong,SK   Shevy Sat, 20 Sep 2008 00:00:00 GMT I'm so sorry to hear about your child. I can't imagine what you are going through. Although I somewhat know your pain... It must have been a shock to see my message... Again, I'm really sorry!Thank you for responding... Kaleb's tumor was removed 5-06. We are now experiencing some difficulty due to the resection. I have seen a total change in personality. Unfortunately no one seems to know exactly what effects to expect from this region of the brain. The right temporal lobe was removed.Starting to see sort of a dark side to my once  perfect child. We don't know if this is something he can control or not. Or possibly just a coping mechanism.Either way, I can't help but wonder why...  I don't know how your holding up, but,  I will pray for your strength... Thanks again for your time!  God Bless you and your family!         Kalebsmom Mon, 22 Sep 2008 00:00:00 GMT