Buphenyl (Sodium Phenylbutyrate)

I'm embarrassed. Remember back a few months ago when I was ranting about that very expensive drug that treats gliomas? (As an aside, it's the same drug that Dr Burzynski uses to create his antineoplastons.) Well, apparently, I'm one of the lucky ones that can get it. I kind of assumed I couldn't because my doctor said it was a long shot. So, like a defeatist, I didn't bother to even check with my insurance. Yesterday, as I was reviewing my lists of recommended supplements and recommended medications, I decided to bite the bullet and not be afraid of hearing, "No".

After several phone calls, lots of hanging out on hold, it looks like Buphenyl (sodium phenylbutyrate) is mostly covered. If you recall, that is the prescription medication that is for people with urea cycle disorders (UCD); it is also used for off label use to fight various cancers.

After a little bit of web surfing I read that Aetna health insurance (not my health insurance - I'll be getting it though Blue Cross Blue Shield) goes as far as covering Buphenyl for UCD and also acute promyelocytic leukemia and malignant gliomas. Wow! The problem? As I try to find more proof that Buphenyl is effective to treat malignant gliomas, I can't seem to find it. There has been one complete response that I've found, but that's just one person. Shoot - that result could be as simple as tumor genetics.

I feel dumb because I wanted this drug, and now I wonder if it's actually worth the side effects and effort. I'm posting the study here for my other brain tumor fighters so that you guys have the info if you're interested...



There's more out on the web, but not much. Please feel free to email me (jessoldwyn@hotmail.com) or post links in the comments section with any information you find - or opinions. I'm not a fast responder to emails, but I read all of them and appreciate the help.

Winston Salem in Pictures

Downtown Winston Salem

My new favorite bug. They're red!

Checking out the gorgeous Wake Forest campus

My favorite flower among the gardens near campus. 

Cutest farmers market in aaaall the land.

It's green. It's lush. It's absolutely perfect.

In the heart of the Arts District. My favorite area!

Setting up for live music and an art walk. This town is so cute!

A proper send off near the rental car return.

I buckled into our flight to Charolette and noticed a lucky quarter next to my foot. Sweet!

The view while I contemplated all of my good fortune over the course of our trip, really absorbing the implications of this new endeavor.  

Arriving into true humidity. It's called rain. But clearly, Mother Nature welcomed us back with a smile.