gr8ful1 Member Posts: 1
edited March 2014 in Brain Cancer #1
Hi all,

I am new to this forum. My husband was dx with a gbm IV 9/07. Since his dx he has had 3 resections, radiation, and temodar. His dr's determined the temodar was not working so they recommended a trial using XL184. There is not much info out there and I am anxious about starting him on it. He is scheduled to start on the trial on Monday. I have been on several support groups and found many promising comments on avastin/cpt-11. My husband chose not to use this because while he was able to do research himself found only negative outcomes with the avastin/cpt-11. I am starting to second guess his choice.

My husbands last resection was 9/25/08. He is still very weak with alot of nausea, headaches, and muscle weakness. All he is on right now is the dexamethasone and protonix. I don't get where the issues are coming from. He has been on the dex since 9/07 and has never had these issues.

Any comments or opinions are greatly appreciated.




  • ChristyM
    ChristyM Member Posts: 38
    I have not heard of XL 184. What is it?
  • Mannie
    Mannie Member Posts: 52
    I commented somewhere else that I go to a support group for people with brain tumors. Several weeks ago we had a neurosurgeon, Dr. Ghassan Bejjani with UPMC - University of Pittsburgh Medical Center, come in and talk with the group in a conversation style interaction. He discussed CPT11 and Avastin primarily. With Cpt11 and avastin, people are given, on average, 24 weeks longer which is unbelievable and sometimes unheard of. Both cpt11 and avastin are labeled for colon cancer. Brain cancer is off label for these 2 treatments but they've been used for GBMs for about 3 years. Dr. Bejjani said he thinks it will be approved for use for GBMs in about 6 months. He said nothing but fantastic things about the treatment. I took 13 months of Temodar (21 days on every month with 7 days off) and it worked for me but if my tumor recurs I don't think I will be able to take Temodar again because the tumor will have changed it's metabolic composition to become treatment resistant. At that point, I hope to take something like cpt11/avastin or just avastin. My oncologist is working on a brain tumor vaccine to prevent recurrent GBMs and he has been very successful with that. Right now it's another clinical trial but he's had a lot of luck with it.
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