Johns Hopkins Experiences Vs. Other Options

first post here... my brother was dx 2/15/08 GBM, surgery, imrt radiation/temodar at Johns Hopkins.

I've been browsing around this board and finding great info and support (big big thanks to all :-)

I have yet to see much chat about treatment at Hopkins. My brother + family have been really pleased with the treatment he's gotten there. And he's come through radiation really well and w/minimal symptoms. He's relatively young (40s), strong and really high-functioning... wants to get back to work asap.

However in the course of our research, we've been scouring the Web for current info on Ben Williams related (cocktail) approaches/recommendations. And we've become quite interested in Duke. 

If anyone can provide some insight on how and why they've gone off-label, done clinical trials, etc. And what results they've gotten. Especially as regards the 'individually customized' regimens I've heard people are getting at Duke. How readily do they go off-label there? They seem to be focused on recurrence there and how to handle it in an innovative way... true?

Thanks in advance for your thoughtful replies, and be well, all.

I do not think you can go wrong with Johns Hopkins, that was my first choice with my father but the doctor there told me that they do exactly the same thing as they do at the Unniversity of Pennsylvania so we just stayed closer to home.

I think Duke is different from most, Dr Friedman really has a spark in him which I think a lot of other doctors lack when it comes to this disease. I am and always was a more conservative person when it comes to medications because I think they do more harm then good,but not when it comes to GBM. I think one needs to be as aggressive as possible with GBM because most people will lose the battle sooner rather then later like one of the posts stated earlier.

I am a big fan of Avastin because I see that it gives people hope eventhough my father never had it.  Good luck

Joe

thanks for your response, Joe.

As per my original post, my family and I all think that JH is fantastic, and we're very fortunate to be able to get treatment there. Dr. Brem and his staff are stellar, and while it is a giant institution, they really excel at caring for patients and their families (not just treating disease). 

I hear you on being conservative w/using medications. On some level, the principles of chemo are kind of crazy. I tend to be risk-averse (and skeptical about the medical institutions) myself and it's very hard to decide what I think the best plan is to advocate for... then of course, it's ultimately up to my brother to decide. I'm all for aggressive treatment, but, then again, it's not my body that this stuff is going into... and pushing for aggressive treatment makes everyone more anxious... which is not good for anyone. I suppose ultimately you have to just keep your eye on the prize and hope to beat these crappy odds. All the best to you and your family. 

 

Is your brother interested in nutrition?

My opinion is that your chances are so much better with combination of meds and nutrition. My father had a kidney transplant 13 years ago so he was on immunosuppresants which means that he battled GBM with little or no immune system. He lasted almost 2 years with GBM, all good until the last 1-2 months.

You may or may not have heard of Dr Jeanne Wallace she is a PHD in nutrition and specializes in cancer patients. She is great and her approach makes sense. We went with her because another member referred her to me at the time. She is full of knowledge and she is well woth the money. You pay about $350 for her initial report after you send her all the information and then if you want to talk to her, she charges per the time spent with her on the phone. I rarely called, I only purchased the sopplements she recommended and that is it.

Everyone has a nutritional wonder cure for cancer out there. If you want to  save time researching and if you want an expert at brain tumors give her a try. Google the name or write back and I will give you her info.

Good luck

Joe

interested in nutrition? heck yes.  but as you mention there's a lot of info out there.

thanks for the lead and for sharing your experience w/ Dr. Wallace.

cheers!

Eric 

My mother is also receiving treatment at Hopkins.  The tumor board does work with Duke and in fact Dr. Olivi is working with Duke regarding a protein.  The typical treatment following a newly diagnosed tumor is surgery (if possible), radiation and temador.  Avastin is an option if there is tumor regrowth.  The overall health and stability of the patient will dictate the course of treatment.  Virtual Trials online will show you the current clinical trials available.  What research you may find can be shared with the physicians at Hopkins.   Although, you probably won't be sharing anything that they don't already know. John's Hopkins is the #1 hospital in the USA so your brother is receiving top care.  But of course as with everyone who is facing this horrible disease, we all research the newest findings and best treatment for our loved ones.