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 :) jessoldwyn@hotmail.com

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 month...in 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.

Metabolic Control Analysis

Cancer as a Metabolic Disease

I have been hounding UCLA for MRI results from my April 20th scan. (Apparently, Dr Liau has been out of town since Friday and will return on Thursday.) Just an hour ago I got a phone call from one of Dr Liau's colleagues letting me know that my MRI is being assessed tomorrow at the UCLA tumor board. That is where they decide if they're going to recommend radiation. Yikes. Although I will opt out of radiation regardless of what they recommend (at least I believe I will), it would definitely scare me if they think I am at a place in tumor growth that would warrant such a drastic treatment. Of course, radiation does not extend my life, and causes such irreversible damage, I feel it would be crazy for me to even entertain the thought. Although I don't have to be afraid of the damages of radiation at this point, I am terrified of what that recommendation would imply. I'm hoping to find out their recommendation (like watch and wait or perhaps even extend my MRIs to six months or worst case scenario - radiation & chemo) either Thursday or Friday. If I have to wait until next week I don't know what I will do.

As an aside, Dan and I had a blast camping and although I didn't eat too poorly, I did jump out of ketosis. It was totally worth it though - we had a blast and even enjoyed some of my mom's delicious cookies. To jump start my ketosis, I started a water fast last night. I'm excited about it, and feel great. It will only last a couple of days, and I'll rest and continue researching in the meantime. Water fasting is incredibly healthy for your body. I've been researching and emailing the ever gracious Dr Thomas Seyfried with questions about his research and book, Cancer as a Metabolic Disease: On the Origin, Management, and Prevention of Cancer, and that's what has turned me into a true believer. If you have brain cancer, you truly must buy this book and learn about real research that will effect and extend your life. It's truly amazing. It's very expensive, over $100, but it's a literal text book that will not leave you hanging. It is so detailed. And, I didn't understand figure 17.1 so I emailed Dr Seyfried and he clarified within a few hours. How cool is that!?! If you want to combat your brain cancer, to do whatever you can, there is no other place to start. The science is proven, time and time again, study after study - even replicated in humans (not just in mice).

From the research of Dr Thomas Seyfried, I have purchased a Precision Xtra Blood Glucose & Ketone Monitoring System. It will help me keep my blood glucose levels low (55-65) and my ketones stable (4.0) through monitoring, which will limit the food sources of my tumor. No more guessing. Monitoring my glucose and ketones is a natural step since I've already been recording, measuring, and limiting my foods. I'm excited to see how my supplements effect my blood glucose levels, also I've read lotions and bath soaps/shampoos can spike blood glucose. I can't wait to turn myself into a little lab rat!

To be clear, the restricted ketogenic diet is not enough to stop my cancer, however, it drastically slows tumor growth.