Tuesday, April 28, 2015

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? 

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. 

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.

Wednesday, April 22, 2015

Does Altruism Exist?

I'm sitting at the JFK waiting to fly back home and wondering to myself how I got so fortunate in life. I just spent the night (as I usually do) with my friends Nate and Miraim, and baby Sol of course, and just being around them is calming, and fun, we talk about everything. It's engaging and energizing, and refreshing, and fills me with joy. Flash to today where Sol, Miriam and I met up with our friend John (Steph was stuck at work) for lunch and again it's the most invigorating, expressive, comprehensive friendship. How did I get so lucky to live this life and be surrounded by such amazing humans? These beautiful souls who think deeply, whose hearts are profoundly touched by human suffering or the human cause. I think they all see themselves as just normal people, but I see them as the glue that keeps humanity real, and kind. I hear their words, as they talk on any subject, and they care. They have such huge hearts, it's the most lovely thing.

The shot went well, fabulously well, Dr Germany said something along the lines of, "We're on a winning team" in reference to my protocol. Man that's a fantastic thing to hear. I don't know why I get to live this - I don't even have a good word for it - blessed life, but I am grateful for every second. And along with living a life that is true to me, and my evolving views, I will also continue my mission to help other tumor patients achieve health, and longevity.

The bandaid peaking out reminds me of today's life giving treatment

The thought has crossed my mind that now I'm stable, I could say screw it and just go live my life (while obviously continuing my treatments). I could stop blogging. I could unconnect from social media and just garden, or find a career that could withstand my seizures, and time off to travel for treatments. I could turn my back on the brain tumor world and focus on anything, or everything, else. I could just spend my time in an unrelated field, or focus on other endeavors, but the truth is that I feel the need to pay it forward. I am driven, compelled, to help others who are just starting their journey, or perhaps are dealing with a relapse/recurrence. I could not turn my back on family, and that's who you all are. You are my brain tumor family, and I will not abandon you. It would be easier, probably, and less emotional, less stressful, but who would I be if I didn't help those in need? It's not the kind of person I want to be. We all have choices every moment of every day about who we are and how we're going to live our lives. I have somehow navigated my way through this crazy diagnosis, and although I'm not guaranteed tumor stability for life, with this path that I'm on, it's working for now and I know I can help others. I've done it and will happily continue. It's actually even selfish sometimes because it makes me feel good when I talk to another brain tumor diagnosees and help them figure out their own plan, because everyone is different. Each brain tumor patient can blaze their own path; they can take little bits here, and little bits there, from other patients who have been successful. When I see, or hear in their voice, the determination to live, it fuels me. When I share what I know, or connect them with others who can also give valuable information, I feel intrinsically good. Is there such a thing as altruism? I really don't know.

So, even though I worry about you guys, all my tumor friends, crying for you at times, I wouldn't change a thing about the responsibility to help. I know this is a choice. I see pieces of myself in you, I know your struggles, I know your fears. Know that I'm here, and I will help you in any way I can.

Tuesday, April 21, 2015

UCLA Results

I'm in a car in Queens, NYC (I'm in town for another NDV immunotherapy shot) and just got off the phone with UCLA. They agree with UW! I am considered "stable without recurrence, with an almost exact MRI scan compared to October 2014", my next MRI will be in 6 months. Of course, knowing me, I was concerned with the words "almost exact" - I wanted exact or smaller - but then I told myself to just chill out, and breathe. Things are good. Things are great. I've had the phone call in the past telling me it things didn't look good, so what am I doing overanalyzing stuff!? Sometimes I wish I was a little more "chill" in general, but then I wonder if I would have gotten the same results if I didn't panic and turn into cancer warrior mode. I look for all the hidden meanings and nuances, always wanting to stay ahead of the game. But I think I can truly be happy with these results, and focus on helping my other brain tumor friends, and continue my protocol at the same time.

Woooeeeeee! Let's keep this roll buttered!

My view as the results came in

Sunday, April 19, 2015

Polar Bearing for FD

Alright, sorry for the delay. We've been inundated with friends all weekend. Yay! So we've been enjoying the company, and now it's time for the results of the fundraiser. Drum roll please.........we did it!!! We climbed 51 climbs, I believe. I knew we wouldn't be able to remember all of the climbs so we took a photo of each route we completed (many we climbed a few times). I'm uploading the photos to prove it, although we did sneak in some kid's climbs, but hey, they were still 10-12 foot climbs, and of course we had to do climbs in the bouldering area (okay okay, we did mostly bouldering to get the quota). Those count, right?

We had so much fun climbing; you can't beat that crew! And in honor of all those magical donations which I consider the equivalent to a bunch of carebear stares to hearts you've never met, nor likely will, Dan and I ran into the drink today to say thank you.

And the video to prove it:

It's far away, and you probably can't easily tell, but I pulled off a shallow dive and we both went under the water for a full dunk. We also spooked three huge rock crab. One of them was missing a pincher, poor guy.

Here's a photo with our photographer, Burke. After filming, he set down the camera and ran in too! So look at that, you inspired a whole new person to get "OUT LIVING IT".

Thank you again for the AMAZING success of this fundraiser. You all completely blew us away with the continued generosity, and support. Please know that the money that you donated is truly going to have an impact on young adult cancer people. It was a turning point for me, a huge eye opener, and one of the best weeks of my whole life. When you get diagnosed then get thrown into the medical system, it's overwhelming and your whole life changes. It's terrifying, and sad, and you have amazing friends that come together to help you, but there are others who pull away, or whom you must pull away from to avoid toxic relationships. All of a sudden your whole life is survival. Your body changes as they cut, (and burn and poison) you're told you don't have long to live. The whole process is overwhelming, shocking, dumbfounding, impossible to relate. So when an organization forms to help us young adult humpty dumpties put ourselves together, it is not only generous and kind, it's profoundly needed. Young adult cancer patients have the worst survival rates. It's scary in here, in this group, and we need support to continue to mend, and flourish. So thank you for helping do that, and thank you in joining us in paying it forward. You have all touched my heart so deeply.

Saturday, April 18, 2015

Fundraising Climb

We have less than three hours before our climb. This is insane, 50 climbs in three hours between two people?! Wish us luck. We're going to need it.

Thank you for all of the generous donations!! You guys seriously brought it! We are so grateful, and excited to be able to send at least three people to camp!! That is amazing, and so fun. Thank you for helping us pay it forward. We, as a group, just did something that will put smiles on faces, and create memories for three people dealing with cancer. It's a really wonderful thing and it wouldn't have happened without your generous donations. Thank you, thank you, thank you!!

I'll do another post tonight after the climb and let you know if we made our goal, and share some photos.

Thanks again you guys, this really made me feel special. It's obviously a cause that my heart deeply connects with. Love you all. :)

Saturday, April 11, 2015

Polar Bear Plunge

Good morning everyone. I posted yesterday about the fundraiser that Dan and I are doing to support  new cancer patients into First Descents cancer adventure camps. What I forgot to mention is that a donation as little as $5 is greatly appreciated. Every single dollar counts. Dan and I are going to climb 50 - count them fifty, five zero - routes in three hours. It is going to be challenging, but it's going to be amazing! I will be taking photos, maybe even video, and posting it to the fundraising page.

And if we don't meet our goal of fifty climbs in three hours next Saturday, we have pledged to do a polar bear plunge. 

Brrrrrr! You can give us suggestions, perhaps I can put a poll on the blog and you can vote on where we leap into the frigid waters.

I am so excited for this challenge, and I really hope we escape the icy Puget Sound. Most of all, I really want to give others a chance to gain lifelong friends, comrades, a true loving understanding peer group that understands them. It's just like new moms tend to reach out to other new moms, we do better, learn more, have better support when we band together. It just makes things better all around. We're here on Earth to help each other, and it's a lot of fun. Let's fundraise to envelope more cancer patients under the FD wing. Let's spread the joy, and the love. Navigating and enduring cancer is one of the hardest trials a person can endure. Let's make it easier for them.

Thank you for reading this, and thank you for the support. I wish you could see the laughter, and the healing tears, the hugs, and the accomplishment that occurs throughout these amazing adventure.

Please, please, please be so kind as to help spread the word about our page. It would mean so much to both Dan and I.

Thank you again,

Friday, April 10, 2015

Climb-A-Thon FD Fundraiser

Dan and I found a way to fundraise for other cancer patients to join First Descents on an adventure camp retreat - by fundraising we make the camp free to the cancer patients! Here is my story from the fundraising page. I'm so excited at the idea of more cancer patients getting to enjoy the experience that is FD. It may be crazy but we're hoping to raise $3,000. In 10 days. Yep, we're crazy. PS All donations are tax deductible! (click to donate)

Hi Guys, 
Welcome to our First Descents Climbathon fundraising page! Very soon, on April 18th, Dan and I will rock climb to raise money so that more cancer patients/survivors can enjoy the life changing experience of a First Descents camp. We signed up a little late, so we only have about 10 days to raise money before we climb our hearts out. Our goal, in the three hour time slot, is to do 50 climbs between the two of us. Is that insane? Yes it is. But, if we divide it by two, that's 25 climbs apiece, then divide it into three hours and it's less than 10 climbs per hour per person. Is it possible? I don't know! But good gopher we're going to give it our all. 
My lovely blog readers, friends, and family, have heard me sing the praises of what a First Descents adventure camp did for my morale, my confidence, my soul, my spirit. It was epic. I also gained profound friendships, soul siblings. They're family. Please help us support First Descents and its mission to provide amazing outdoor adventure programs for young adults impacted by cancer. Please consider making a donation. I can't emphasize enough how excited I am to be raising money so that others can enjoy what I've already been able to experience.
As many of you know I was diagnosed with a brain tumor on April 13th, 2010 at the age of 29. I had my first brain surgery on the 27th of that same month. It was an awake crainiotomy. They literally put me under, sawed open my skull, woke me back up and dug around in my brain with electrodes, and tools, to determine what was tumor tissue, and what was healthy brain tissue. During the process I was joking with the doctors and answering their questions - it was wild! They awake craniotomies in cases where the tumors grow dangerously within important areas of the functiong brain. For me that area was speech, language, and movement. I was at risk of being paralyzed on my right side, of being unable to process or use language.
Not long after the eight hour brain surgery, my body created a blood clot in my brain along with hemorrhaging in the tumor cavity. It required a second, emergent brain surgery. When I came out of the second brain surgery, I was paralyzed on my right side. I couldn't say more than a one syllable word. I didn't know the months of the year, or the days of the week for that matter. I couldn't recognize everyday items. I couldn't walk. I couldn't feed myself, or even wipe my own bum. The doctors and nurses said I would not get better. And they were almost right. It took shy of a full year to learn how to read  again, and run the way that I used to, the way I loved. I still get better every single day. 
I have since had a second brain tumor grow, and it was resected. I have been doing active treatment ever since (two and a half years). My treatment protocol is intense and dedicated. I've flown to other countries for immunotherapies, I swollow hundreds of pills a day. One of my main treatments must be refrigerated, and it requires applications of medicine every four hours. (This is how I have to insert the medicine up my nose every four hours.)
When I went to my First Descents camp I was nervous because of my treatments. I thought  I wouldn't be able to enjoy all of the activities. But the First Descents crew, especially "Honeybucket", made sure that I had my medicine, going as far as strapping the cooler of my treatments to her back as we climbed. (My medicine is in a cooler in that gigantic backpack.)
For the first time since my diagnosis I wasn't the weirdo doing treatments, or the girl who had to stay home because of seizures. I was free. I was supported. I was normal in a sea of my peers. Just writing those words, remembering the freedom, has caused me to start crying happy tears. This is what I want to share with others. I want to pay it forward so that no other cancer patient ever feels alone, or weird, or isolated. We are not meant to be alone, solitary. It puts a damp cloth on the fire of our soul.
There is no pressure here, but if you can't make a donation at this point, please help me reach my goal by sharing this page on Facebook and Twitter. Or, even better, send an e-mail to friends you think might be interested in contributing and include a link to my page!

Thank you for loving me, for supporting me, and for helping me pay it forward.
With love,
"Coconuts" (and "Huckleberry" too!)
Want to donate? CLICK HERE

Wednesday, April 8, 2015

Another Seizure

Still waiting for the UCLA MRI results. Haven't been posting much, but wanted to make sure you all know I'm fine. Had another seizure yesterday. A legitimate one, not just an aura. I had forgotten how bad seizures hurt. And today, the day after the seizure, my head feels like it's exploding. Especially if I lower my head down toward my heart (is that normal?). Freaking seizures. I'm exhausted and can't retain much since wires are all fried. It's a nap day. 

Dan took this after I fell asleep. He had rushed home to help me.

It's good that Dan could come home and help me. He found the house in a mess, water everywhere (counter and floor) - I had tried to get ice water to cool me down and stop the seizure's progression. He found my packet of lorazepam (my seizure pills) on the ground crumbled by my fist as I couldn't get the pills out. I was half in and out of my clothes because I was overheating, then freezing, but couldn't get dressed again since my entire right side was paralyzed. My lips were blue and my skin purplish, from chill. It all always happens so fast. I imagine it's similar to a stroke. (Although, perhaps a little less damaging.)

My right side was paralyzed, then numb, the entire rest of the night. It's starting to get better, but shockingly this seizure has had very long-lasting side effects. It's one of the most intense seizure situations yet, without losing conciousness. 

Hope you all are well. I'm off to rest some more. Just thinking hurts. 

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