Trial at Long Island Brain TumorCenter

My young (41) beautiful sister was diagnosed w GBM back in February 2012. They removed some of the tumor when they went in to biopsy, but since, it has been called an inoperable spot. She was doing well on Temodor and radiation until a few months ago. An MRI showed the tumor had progressed, and they immediately took her off The Temodor and put her on Avastin and something else. Initially things looked promising, tumor had shrunk, but because of her low platelets she has been unable to receive the "something else" drug (ill ask tomorrow what that is") and the MRI from this past week had shown regrowth. We know what the statistics are, so naturally we are all scrambling to find out what to do next. She is in NYC, and has been treated at Sloan Kettering.

My question is whether anyone has any knowledge or experience of a trial being done at the Long Island Brain Tumor Center? Apparently they are running a trial with a drug called AR-67, and my sister is considering joining. This is for patients with recurrent rumors, and the nice part is the treatment does not include chemo, although I think she would still get Avasin. Any insight into this facility or trial would be appreciated.

Would anyone suggest Duke? I know they are leaders in this field, but my sister has lost use of her right arm and leg (and has 4 kids) so traveling is difficult. Would anyone suggest that with the medical advantages there it would be worth the difficult experience of going?

Just trying to help her decide which would be her next best course of action. Thank you to everyone in this community. My prayers are with each of you tonight.

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My sister has been in treatment for glioblastoma since February of 2010. We got her into Duke right away and I been so happy with that decision. I know the travel is difficult but we feel it has been so helpful in keeping her on the right track. She has signed up for every experimental drug and treatment out there. She went almost 2 years with no regrowth and just this last October the tumor started to regrow. I can't say enough great things about Duke. Our Cancer center in our home town is wonderful but that second opinion and other minds thinking through her treatment has been priceless. My best sent to you, your sister and her family.

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I was diagnosed with an Oliodendroglioma in June 2011, had craniotomy at Emory and researched every facility in the US. I settled on Duke since, in my opinion, it's one of the top, if not the top Brain Tumor Centers in the world.

They are on the cutting edge of research and are able to get new treatments from the lab to the patient faster than almost anywhere. I would contact Dr. Friedman, he's the head guy, the rock star of the Brain Tumor world. I live in Atlanta so follow up at Emory would have made more sense but I travel to Duke, it's now twice a year, for follow up and send my MRI's to Duke every three months ( it was every two months, they extended me to three last year. There is a lot you can do on your own, especially with diet. I would reccommend you buy the Anti Cancer Diet book written by Dr. Shriever, a twenty year survivor of brain cancer.

The most important thing in this struggle is to never give up hope and always look at life as positively as possible. Doctors are amazed every day at the miracles they witness. Never underestimate the power of the human spirit. Good Luck

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I will pray for you...

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Thank you everyone for taking the time to respond, and I wish each of you and your family members continued success in your treatments in 2013. I have found out more about the treatment my sister is looking to start on Long Island. It's called rindopepimut (also known as cdx-110) and it's a vaccine that works in conjunction with the Avastin that she is already on. I'm encouraged that this treatment is also one of the trials being done at Duke. If anyone has any experience, feedback or information on CDX-110, I'd love to hear about it.

Thank you again for writing, praying, supporting...etc.

With Love,

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