Recurrent GBM - clinical trials?

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bernadettep bernadettep
(Inactive)

Recurrent GBM - clinical trials?

by bernadettep on Tue Dec 04, 2012 09:28 PM

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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.

Bernadette

 

RE: Recurrent GBM - clinical trials?

by ravirajagopalan on Wed Dec 05, 2012 01:24 AM

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Hi Bernadette, is the tumor resectable? If so, then the following trials were the ones I considered for my wife: - dendritic vaccine trial at Cedar Sinai - Allogenuc T-cell trial at UCLA. this is direct infusion into brain after surgery. - Avastin infusioninto brain (Cornell). If not resectable, then CDX-110 + Avastin trial (Stanford is one trial - am sure there are others). Regards, Ravi

RE: Recurrent GBM - clinical trials?

by ravirajagopalan on Wed Dec 05, 2012 01:27 AM

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H Bernadette, one thing I forgot to mention: the first three require the surgery to be done at the hospital running the trial. Good luck, Ravi

RE: Recurrent GBM - clinical trials?

by siblingof on Wed Dec 05, 2012 01:47 AM

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Last I heard was the ICT 107 trial was full, but double-check on that. I'm also not so sold on clinical trials since we've been in two... the first didn't help and the second was a disaster. Avastin really is the best bet after first recurrence, so if you can find a clinical trial that includes free Avastin that may be the way to go.

RE: Recurrent GBM - clinical trials?

by siblingof on Wed Dec 05, 2012 01:53 AM

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PS-- When you search on clinicaltrials.gov , you'll find a ton of open studies that involve Avastin. Most of them call it "bevacizumab".

bernadettep bernadettep
(Inactive)

RE: Recurrent GBM - clinical trials?

by bernadettep on Wed Dec 05, 2012 02:14 AM

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Thanks everyone for your input. Does Avastin only work for certain tumours?

RE: Recurrent GBM - clinical trials?

by GBMBGONE on Wed Dec 05, 2012 03:07 AM

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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

RE: Recurrent GBM - clinical trials?

by RobinMB on Sun Dec 09, 2012 02:16 AM

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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. 

RE: Recurrent GBM - clinical trials?

by jon4156 on Thu Dec 13, 2012 04:46 PM

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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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