Wednesday, May 1, 2013

Take The Fight

Good Morning! It's sunny and gorgeous outside, I may just grab Emma for a walk in a little bit. I have all kinds of things to take care of, though, so I'm a bit stressed. I saw a comment this morning about contacting me privately, I'm sorry for the confusion - it's definitely not easy to see my email address. If you scroll down and look at the left side of the blog, and click on the photo of Danny and I, it will send you to my little bio. On the left side of that page it says, Contact Me and if you click on Email it will direct you. But, in the interest of ease, here it is :)

Part of my stress is organizing for a very exciting trip. I have been invited to join the non-profit group TakeTheFight. I'm so excited! I'll be the first remote patient! So here's the deal, this program pairs incredibly gifted, driven students with cancer patients. My strategist is Lindsey, and I'm flying to meet her, the rest of the group and meet with Dr Glenn Lesser a neuro-oncologist at the end of the North Carolina! Fun! Are you confused? I'm not explaining this very well...

I'm gathering all of my medical records from UCLA and UW and getting all of them over to NC so that they can make copies and compile everything in a coherent manner. Lindsey will review all of my pathology and review my case. She will help me make sense of what I'm going through, of what to do next, to understand what the doctors are recommending, and hopefully will help me understand my unique tumor morphology so that I pick the most effective treatments. Each brain tumor has its' own genetics and what works for one tumor - even within the same type - may not work for another. You really need to personally target your tumor, and approach it with a specific arsenal of treatments based on your unique pathology. That reminds me, I started my metformin today. I need to email Dr Seyfried with a question though, in his textbook he recommends against metformin, instead opting for a drug that is not released to the public, and another drug that costs $7000/month. I need some clarification. Dr C says I can do all at once (except for the one that I can't get access to). I want to know why Dr Seyfried isn't keen on the metformin with the RKD (restricted ketogenic diet). And I need to call my insurance to see if I can get the oober expensive phenylbutyrate (sp?) covered - not holding my breath. Phenylbutyrate fights gliomas on their own - can completely kill them! But the drug was created for a genetic defect. The price is exorbitant because those who are born with the defect are covered by the government for the rest of their lives. So, the pharmaceutical company can put whatever price tag they want on it and the US government has to pay it. How effing sick is that!?! It's not as expensive in Germany, according to Dr N but I can't get it there. Ok. I'm clearly off on a tangent and need to keep taking care of things or my brain will explode. If I didn't explain TakeTheFight very well, please check out their website! Oh shoot - just check it out anyway, the program is GENIUS. It's the future of cancer care. To have your own advocate? Heck yes! And what's better than a student? Nothing. Young brilliant minds. Problem solvers.

Here's Lindsey, my new partner in crime...fighting :)

I've attached an interesting interview with Dr Thomas Seyfried, the King of Keto (I just made up that nickname). Hope you enjoy it as much as I did.


  1. That is very exciting Jess! Sounds like a wonderful organization, and just what you need.

  2. Sounds like a great opportunity! I'm curious what Dr. Seyfried thinks of Berberine. It's a supplement that has a similar effect as Metformin and some claim is superior. Here's some info:

    I'm currently taking it. Please share Dr. Seyfried's comments about Metformin; I'm very interested in his thoughts.


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