Go and Go Faster

Evening, friends!

Sorry for the break on the blog, I've been assessing and working on my seizure issues. What I'm learning is that the less tumor work, and less technology I use, the fewer the seizures. It's great news - to isolate the issue - and at the same time it sucks. I am not the woman I once was. I keep trying to be a woman who can do it all, chew gum, rub her belly, and walk, but I can't. I try and try then I trip and seize. It's an almost impossible lesson to learn.

It is very hard to slow down, to cut back on tumor research. I'm still keeping up with the Cancer Compass thread which is profoundly informational, with updates daily. I'm still getting my updates from Al Musella's website, and still looking into studies every day or two. I can't help it, I get curious, something will pop in my head and I'll have to find answers. And I'm still answering brain tumor emails, still helping those with recurrences, those newly diagnosed, and general questions. I'm just not actively trying to solicit patients to help like I had been. As you guys know, I don't do this for money, I don't get paid, I'm just trying to pay it forward.

One thing that I hate about brain cancer, which is specific to our group, is the freaking seizures. As if it wasn't enough to go through everything: the brain surgeries, the brain damage, the speech therapy, physical therapy, the recurrences, the research and constant fear of recurrence. Above all that, we get trapped in our bodies unable to trust our brains and our being. When you're epileptic, your body is not your own. When you're epileptic, you live in fear. When you're epileptic you can't just push through, when tired. That is what I somehow can't seem to imprint on my mind. My body is not my own, my brain is not my own. I can not overwork it. I can not push though. That's a tough lesson for a girl who has two speeds, "go" and "go faster (preferably with coffee)".

Anyway, I just had to give you guys that update since I've been MIA for several weeks. The good part? I joined a morning walking group, which completely feeds my soul. I've also joined a Wednesday track running group (although in a couple of weeks we will switch to trails), which keeps me laughing, and sweating, and alive. I had missed all of the human interaction. I'm a social being that needs face to face smiles, and hugs, and high fives, and slaps on the back. As you know, if I'm having seizures, I get stuck, isolated at home. By cutting back, I'm able to LIVE.

I can either be tethered to a computer, trying to solve the world's problems, and quickly disintegrate, or I can make myself some guidelines to limit my emotional exposure. I wish I wasn't so sensitive, that I didn't worry about people so much, but no matter how much I try, I can't stop it. When I talk to these brain tumor patients, trying to help them navigate, I end up not sleeping at night. I am a sponge that absorbs the fear, and anxiety. I don't know how to fix it, and I don't want to stop, and I don't know how to find a balance between the two. On goes the riddle of my life.

Please don't be afraid to contact me with your brain tumor questions. I hate even sharing that it stresses me out because I know people need the help, the information, but I have to be honest at the same time. That's been the whole point of the blog is to have place for me to vent, and explore, and be a resource for others. I'll figure out a way to help and not run myself into the ground, I promise.

A triumph this afternoon, my first cherry tomato of the season has joined the world!

With love.

Eat Wild. Eat Well.

Who do you want to be? What matters to you? What do you want to accomplish in life?

These are questions typically reserved for high school juniors or seniors, but they don't have to be. It's a question I routinely ask myself, and with time, the answer continuously evolves. But at the core, the basis of who I want to be, what matters, and what I want to accomplish is very concrete, but broad, and has no end date. I want to be a good steward of this awe inspiring Earth. I want to embody a kind heart that loves deeply. I want to learn about native plants mostly edible, but also non-edible. I want to learn about true nutrition from wild plants, how to help sustain Dan and I through gardening. How to harness local resources like grey water systems, or rain barrel water retention systems. To work toward independence. I dabble in making things from scratch, down to grinding the nuts into flour for baking. I recently made kefir from raw goat milk. I want to see how things work. I want to recognize that all foods are not created equal. That animals, especially the ones who feed us, are living creatures that deserve kind lives, not to be jailed in tight quarters with broken bones, an entire lifetime of misery. You can't nourish your body, and soul with another living creature's sorrow. You recognize what your body feels like when you're stressed, with all that cortisol surging through your body. Imagine an animal stressed, and depressed for its entire life, then you eat it. The product of the meat is inferior, it's only logical (not to mention the poor animal). There's science to back it up. We're making decisions, and there are consequences. That extra money spent on groceries is the best investment in your health, and your soul. 

This is part of who I am, and what I believe. I believe we're all connected, that the spinach in your smoothie when cut fresh has exponentially more antioxidants than the old stuff in the cooler section at Costco, that's wilted and already rotting. That we're being fleeced into thinking that cheaper products are equal in value. But what is the value of your health?

You don't have to think like me, or agree with what I am saying, but this is what I am recognizing as I evolve. That toxins sprayed on crops ARE a big deal. That we are damaging our water sources, and polluting our bodies, and it's such a shame. We are sold into this belief that we should work hard, climb the corporate ladder, cut costs and find the cheapest products, never miss work, go go go, and we're missing the bigger picture. That life is short. Our Earth is not impervious, or infinite. The toxins we spray on our soil lasts for eons. This is no small problem. In 1970 1 in 30 would be diagnosed with cancer in their lifetime. Now it's 1 in 3. We are allowing big corporations to conduct science experiments, and we're the rats. And the government is not protecting us. 

If you die tomorrow will you have been the person you wanted to be? Did you accomplish what really mattered? Do you have children? If the above statistics scare you, consider what it will be in 40 years. Will it be a situation where your children will not only be diagnosed with cancer in their lifetime, but even worse battle three different types? It's a real concern. And it should terrify you. Our culture, and our values are askew, and if we don't stop and assess the true crisis, and make adjustments, the issues will just continue to accelerate. 

What can you do? Take a moment and listen to your soul, your inner voice, about what you value, and what you want to accomplish. Then remember that you don't have to take these issues on as life missions, or spend a lot of time trying to move mountains. You can simply speak with your pocketbook. Support causes you believe in. Pay the extra couple of bucks for better food. If that means you don't get the next pair of jeans, who cares. Pick you. Pick your family. As you walk to the register, or to the sweet woman at the farmer's market, with your organic produce, and grassfed chicken breast, you can smile and know that you're protecting yourself the best way you can. 

Maybe I'm lofty, and perhaps even annoying about this, but life is so beautiful, and what you put in, and what you value, gives back tenfold, be it negative or positive.

A brilliant book to get your wheels turning...

TMZ Hypermutation in LGG (Low Grade Glioma)

I’ve been meaning to write about this issue for several months, and apologize for the delay in sharing. I was overwhelmed by the magnitude of the report, and didn’t know how to broach it. This is by far one of the most important research studies I've ever read regarding low grade glioma. Finally, some legitimate information which should help patients decide on treatments. I have sent the papers to my tumor friends that I know are considering, or on TMZ, of the hypermutation issue, and now I know that a post has to be written for those out there on the interwebs looking for direction on whether or not to take temozolomide (TMZ) for a low grade glioma. I’m going to embed the research study, along with the supplement, and although I realize not many are interested in reading the entire report (which is actually only three pages of reading), I’m providing a few teasers so that you can either get the gist of it, or it may even entice you into reading the whole thing. Just as an aside, if I know you already took TMZ for your low grade glioma, I did not send the documents to you. I went back and forth on whether I should say something, or not, and I decided it would only be harmful, and scary. If you've already taken it, there's nothing you can do. And ultimately, most likely, if you are a hypermutator, you would have found out with a recurrence during or around treatment. 

Mutational Analysis Reveals the Origin and Therapy-Driven Evolution of Recurrent Glioma 

(TMZ Hypermutation of grade 2 glioma induced into GBM)

“Beyond maximal, safe, surgical resection, there is currently no standard of care for patients with low-grade glioma, and options include surveillance, adjuvant radiation alone, TMZ alone, or radiation and TMZ.”

"While the initial tumors and most of the recurrent tumors in our cohort had 0.2-4.5 mutations per megabase (Mb) (21, 22), six of the ten patients treated with TMZ had recurrent tumors that were hypermutated; that is, they harbored 31.9-90.9 mutations per Mb (table S6).”

"The introduction of thousands of de novo mutations may drive the evolution of TMZ-resistant glioma cells to higher states of malignant potential (1, 23). Indeed, all six recurrent tumors that showed evidence of TMZ-induced hypermutation underwent malignant progression to GBM, a high-grade tumor with a worse prognosis (8, 9).”

"We also demonstrated an alternative evolutionary path of low-grade glioma that is largely determined by adjuvant chemotherapy with TMZ.”

“Mutation rates in each tumor pair suggested that >98.7% are due to TMZ-induced mutagenesis (10).”

"There is currently no information on whether treatment of grade II astrocytomas with TMZ confers longer overall survival (8)."

"Future basic and clinical studies must weigh the initial antitumor effects of TMZ against the potential risk of inducing new driver mutations and malignant progression.”

What I see, that is lacking in our medical system, is a complete disconnect between current research and general practice. I’d like to think that doctors want us to survive, that they prescribe treatments to prolong our lives, but the fact remains that the current system is antiquated, and dangerous. It’s dangerous because there is tons of research being done, but doctors are not aware of the changes, and new developments. When a study like this comes out, every nerco-oncologist in the world should be aware, and changes in treatment recommendations should be adjusted accordingly. People are dying because of this lack of knowledge. It’s unacceptable. 

We are not receiving “best practice” we are receiving “marginal, outdated practice”. I recognize that doctors are busy, that they have massive workloads, and we can’t expect them to be up on all the latest research (or can we) but this is our lives, we need the most cutting edge information. It is my opinion that before neuro-oncologists prescribe TMZ alone (or even in combination with radiation) low grade patients should be apprised of the serious risks of taking TMZ. That using it alone (on low grade glioma specifically) has shown a 60% chance of causing a recurrence that will present as a GBM. That is a horrendous risk. It’s well known that brain tumors recur and recur and recur until it progresses to the point where it kills you, but usually with low grades (left untreated by TMZ or radiation) it most often recurs as the same low grade. At least for the first few tumor recurrences. Living a life with a glioma is a chess game. It’s always a guessing game about when to treat and what treatment to use. You don’t want to “poke the beast” with the wrong treatments, yet you often aren’t comfortable with the standard wait and watch protocol. 

It is imperative that patients know the dangers of TMZ with low grade glioma so that they can make educated decisions. That’s why I’m writing this blog post. I hope it helps spread the word that treatment with TMZ for low grade glioma has inherent danger.

Want to know what my buddy Stephen from Astrocytoma Options says? 

"As the hypermutation phenotype has been seen in some grade II astrocytomas and also in glioblastoma (14) following TMZ therapy, by extrapolation it is likely that it also occurs in grade III astrocytoma patients. The frequency of this occurrence will not be known until larger studies are completed. This new knowledge should have immediate impacts on chemotherapeutic strategies, especially for lower grade glioma." 

One of the many things I appreciate about Astrocytoma Options is that Stephen has a way of digesting information and using it to our advantage. What I'm saying in this blog post, is not that we should throw out TMZ, but that we need to better understand it's benefits and downfalls. It may still be a benefit in a cocktail approach, but needs to chosen with care. 

"If a decision is made to proceed with TMZ chemotherapy for lower grade (II and III) glioma patients in the adjuvant setting (post-radiation) or in the absence of radiation, one strategy to reduce the risk of TMZ-induced hypermutation could be to apply a combination strategy, involving a simultaneous or alternating application of other cytotoxic drugs, which reduce the evolutionary selective pressure exerted by TMZ alone."

I hope this information lives on in the interwebs, the information must get out, and it seems as if we have to change the way we are treated, literally, by informing our oncologists.