Although most said they'd let their physician know if asked, survey finds
by bernadettep on Tue Dec 04, 2012 09:28 PM
WE just got back from the NO and results from latest MRI show tumor regrowth on the left frontal lobe. Original surgery was right frontal lobe. We haven't spoken to surgeon yet.
I am interested in clinical trials for recurrent GBM. Gene therapy or immune therapy. I'm too distressed to remember what i had previously researched.
I think the TOCA trial was interesting or the ICT-107 (but this one might not be for recurrent)
we live in Calgary Alberta and the initial thoughts here are surgery followed by the 'JBAL' trial.CCnu vs CCNU with lomustine vs lomustine therapy alone.
Only other chemotherapies are: VB16, CCNU, Daily TMZ, or Avastin (which we can't afford)
Please, any advice would be greatly appreciated.
by ravirajagopalan on Wed Dec 05, 2012 01:24 AM
by ravirajagopalan on Wed Dec 05, 2012 01:27 AM
by siblingof on Wed Dec 05, 2012 01:47 AM
by siblingof on Wed Dec 05, 2012 01:53 AM
by bernadettep on Wed Dec 05, 2012 02:14 AM
by GBMBGONE on Wed Dec 05, 2012 03:07 AM
ICT-107 is for newly diagnosed not recurrent. My research and findings including our NO( who is not on the Avastin bandwagon) is Avastin which is best as last resort. I was able to review pre and post Avastin MRI's of his ( he is part of a teaching institution and patient info was deleted to be hippa compliant) and needless to say on most patients while initially looking impressive about six months out it looked like a bomb went off. While i know and respect those that are on the CC that have seemed to find benefit from it, i just think it was rushed for approval prematurally. I know options run thin in this arena. We just returned from our 19 Month Mri tonight. Waiting for our NO to call. Not sure what e will do if there is recurrence but i know we will look at Avastin last. Best of luck
by RobinMB on Sun Dec 09, 2012 02:16 AM
Our NO loves Temodar and Avastin. He doesn't seem to know anything else. My husband just completed the dendritic cell vaccine and another tumor grew in the corpus callosum. The docs say it is inoperable now. We just don't know what to try next. So far, hubby has only had one infusion of Avastin. If he experiences any side effects, we have to find another treatment. I would have to agree with your NO. When you said a "bomb went off", what did you mean (more tumors; more damage to organs???) I heard that Avastin obscures MRI. So if I understand correctly, the MRI's are difficult to read, and therefore make it seem like the tumor is disappearing when it actually is not. I would like your opinion on this. We are desperately seeking for the best treatment available. This is my husband's second recurrence within 9 months. I am not giving up hope.
by future2020 on Thu Dec 13, 2012 02:27 PM
by jon4156 on Thu Dec 13, 2012 04:46 PM
Small brain tumor changes are difficult to read by MRI all the time and have no relation to Avastin or any other therapy. Most people show a preliminary reduction in tumor size with Avastin which is the anticipated and expected response. At a high level its pretty simple, tumor depends upon blood to grow, cut blood supply (with Avastin) and the tumor starts to die.
While some people have done well on Avastin for an extended period, the description GBMBGONE gave is a reality for many patients.
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