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.

Green Lake Gump

Great news. It looks like my oncologist's nurse is going to send over the necessary medical records to UCLA next week for application into the clinical trial. Wooo hoo! Somehow I feel like I'll need to follow up on that, but that's fine. As long as it gets done.

On another note, I would like to share an amazing herb that fights malignant gliomas (and ulcerative colitis, inflammatory bowel disease, asthma, arthritic, crohn's disease, breast cancer, and leukemia). I probably sound like a crazy advertisement, but I love sharing things that help! It's incredibly exciting because it's non-toxic, even in crazy high doses like 1,000 mg/kg. I've even found a study where rats were implanted with gliomas, then they fed them the boswellic acid at 120 mg/kg three times a day at eight hour increments. By day 14 the glioma had shrunk by 60%. SERIOUSLY. This boswellic acid lowers inflammation which is the environment that cancers thrive in. It's amazing! I'm very hopeful that I can get the same results. Here are a few links for my brain tumor fighters...

Boswellic acids and malignant glioma: induction of apoptosis but no modulation of drug sensitivity.

Boswellic acids inhibit glioma growth: a new treatment option?





The best part about the whole thing is that the company that makes the best quality is just a mile and a half from my house. I just jogged over there to pick up another bottle. AWESOME. This little Green Lake Gump runs all over her neighborhood to literally run her errands. It's so much fun. Choosing to avoid driving (by now it's legal for me to drive again after my seizure) has forced me to get out, get sweaty, get stinky, and gain perspective. I feel empowered.