Showing posts with label IDH mutation. Show all posts
Showing posts with label IDH mutation. Show all posts

5.23.2014

Blinded By The Fashionable Ketones

I've been swimming in the interweb waves all day. I'm gathering, learning, relearning, trying to absorb, planning.

Things I know:
  • You can not completely eliminate glutamate/glutamine from your diet...it's in every once living thing (except lard & most oils)
  • Your body can create glutamine/glutamate when it wants it (thanks muscles and other less obvious trickery)
  • You can eliminate glucose from your diet, but your body will just create it anyway (muscles save the day yet again)
  • Limiting glucose and glutamine/glutamate is ideal for slowing tumor growth, but when hungry, a vegetable which may increase circulating glucose is better than eating a bit of meat (only because I'm IDH1 positive - the glutamine eater)
See, I knew, I had heard, I had read, I had discussed the fact that protein is a growth factor for all cancer. But I got bogged down with the whole ketogenic trend specific to brain tumors. I thought, perhaps we were bred differently. That we were special. That ketones were the key. I'm not saying the ketogenic diet doesn't help slow brain tumors, but from the research I've read it has to be calorically restricted. In its natural state the diet does not slow tumor growth (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1819381/figure/F2). But in my mind, I figured, if I could do the restricted ketogenic diet (allegedly the ketones themselves fight tumor cells if you get a high enough blood serum level) at least most of the time, it would be better to reduce the glucose, and protein (not realizing it was specifically glutamine/glutamate I needed to focus on) with the RKD than be a vegetarian or even do Paleo. The problem continuously surfaced, though, that I would putter out of energy. And when that happened, instead of reaching for a vegetable (carbs kick you out of ketosis) I would reach for protein like peanut butter or a hard boiled egg. Exactly the wrong snacks for low grade IDH mutant brain tumors. I was essentially handing Herman a big ole glob of glutamine.

It's crazy, I remember a phone call with my nutritionist where she emphasized that my green smoothies (which are all vegetable save an avocado & lemon) turn directly into sugar in my body; that without protein with each meal and snack, I was killing myself. Not her words, but still. She was emphatic about the huge sugar spike that would surge through my veins, therefore feeding the tumor. IE: Killing myself. Same same. It put the fear of Hermie in me, driving home the whole protein must be included to survive mantra. Remember all the times I've written about feeling guilty about my apples? That was because of my nutritionist. As was my deviation from my green smoothies. It leaves you feeling crazy. Who's right? What do I do? Am I just supposed to pick the lesser of two evils? Glucose spike over protein consumption? Girl still gotta eat.

Things I know:
  • Known unbiased tumor fighter = caloric restriction (click for a great study on the benefits). It doesn't seem to matter if you eat the calories from protein, fat, or carb, just be sure to take your BMR and cut it by 30% (some say 20% others 40%). That's the surefire way to hypnotize the giant. It won't stop him, but it'll sedate him, and maybe during that time we'll find just the right cocktail to kill him. It's also the thing I always forget. Or maybe I just don't want to deprive myself so I black it out from time to time. :)
  • Healthy fats like omega-3's (fish oil) continue to be a great way to supplement my diet. One of the least burdensome of the food groups, in regard to the glucose/glutamine issue. However, not that palatable as a snack. Just sayin'.
Reviewing over my notes, it's clear about the caloric restriction, but I'm also wondering if perhaps soduim phenylbutyrate & metformin could really work together, like hit it out of the park, for IDH mutant tumors (along with all my other goodies, of course - my newest motto is never take away, only add). I know I repeat myself a lot, but it takes a lot of hammering things into my brain, and even then details and concepts, the most obvious of stuff, often slips away. I wish I could just blame it on the tumor, but I think the more you use your brain the more you have to make space. Happens to all of us.

Am I more scared about this MRI than usual? Maybe. It's the turning point that we hit and had tumor growth after the first brain surgery, so technically, this is when Herman should show back up. Not to mention the fact that the proliferation rate of this tumor was faster than the first. If they see tumor I won't be surprised, only disappointed. If they don't see tumor I will consider it a miracle. It's not that I'm pessimistic necessarily, I just don't take this no-visible-tumor stuff for granted. I don't assume that all of these treatments "have" to work. There have been so many that have gone before me that have given everything they had, and still, it wasn't enough, they were taken. I know that life is a gift, and although I'm scared, more than scared actually, with every exhale of breath I remind myself that I just enjoyed a luxury.

Time for lunch...




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