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Grade 3 Anaplastic Oligo - OHSU BBBD Trial

KellyAK2011
Posts: 22
Joined: Oct 2011

Has anybody tried this after disease progression despite radiation and Temodar?

cindysuetoyou's picture
cindysuetoyou
Posts: 513
Joined: Dec 2009

Hi...

I just saw this post on CSN after I was directed here by a google search on the BBBD. I'm sorry that I didn't see this sooner.

My son David is currently doing this clinical. I'd love to correspond with you regarding this procedure.

We have had a rough time, but we also had "dramatic" results. Our NO said that he and his team are "ecstatic". There has been a marked reduction in David's tumor load, just from the December to January MRIs. It's really obvious...you can see the MRIs in my expressions section.

We have only done 2 BBBDs. We are scheduled for a third one in March.

My son David is battling a recurrence of an anaplastic oligodendroglioma. He is 28---he was 25 at the time of diagnosis. (May 2009) He had a complete resection, followed by 6 weeks of radiation, and he was taking Temodar 5 days a month until July of 2011, which is when we were first aware of the recurrence.

I hope you are doing well today. Please let me know if you have any questions or if I can help you in any way.

Love and blessings,
Cindy in Salem, OR