Wednesday, June 24, 2015

How to get into the Duke Polio Virus immunotherapy trial for GBM

Hey Friends,

I received an email this morning from Life Extension (the supplement company) with details about Duke's re-engenineered polio virus immunotherapy that is having amazing results. There are whispers of cures, and miracles. It's not something that's applicable for me in my stage of cancer, but I'm here to help you get the information to see if perhaps it can help you survive. There is even a phone number for a direct call to be evaluated for inclusion in the trial. I hope this works for people. Good luck! Fight on my friends. Look outside the box, ask questions, know your needs, and keep your eyes open. 


Duke Polio Trial for Glioblastoma

In 2013Life Extension® announced a discovery that added precious years to people stricken with a lethal brain cancer called glioblastoma. The drug shown effective was valganciclovir, which is typically prescribed to treat cytomegalovirus. 
In 2015, CBS News 60 Minutes featured a story about research emanating from Duke University Medical Center showing complete responses in terminal glioblastoma patients who were administered a re-engineered polio virus directly into their brain tumor. The re-engineered virus prompted a powerful immune response against the viral-infected cancer cells that in some patients appear to eradicate their glioblastoma. 
The Magnitude of Human Carnage 
Each month, 1,000 Americans die from glioblastoma. Up until now there was no cure. Survival from time of glioblastoma diagnosis averages only 15 months. 
Valganciclovir extended survival to over four years in some studies. Doctors are cautiously optimistic that this re-engineered polio virus may be curative. 
How to Enroll in Duke University Study
If you or someone you know suffers from glioblastoma, here is the patient criteria needed to participate in this Phase I clinical study: 

  1. You must have a recurrent glioblastoma (meaning you must already have failed at least one conventional treatment). 
  1. You can only have 1 area of tumor. 
  1. You must be fully functional, that means totally coherent and be able to walk and do things on your own. 

If you said yes to all 3, call and speak to Brittany at 919-684-5301and press option 1. Brittany will set you up to speak with the nurse who will continue with the medical screening process to see if you qualify to enter the trial. 
Questions Life Extension Asked Duke University
Question: How many glioblastoma patients is Duke accepting? 
Answer: There are no limits at this point. People have to qualify after they provide us with their medical histories and complete all the paperwork. If accepted, they then meet the nurses and doctors for their appointments. 
Question: How long is the wait to begin treatment? 
Answer: Treatment starts after the patient meets all the appointments and completes the screening. Patients start treatment as soon as everything is in order. 
Question: Are younger people given preferential treatment? 
Answer: No. 
Question: How many people are not getting treatment because of the favorable 60 Minutes report? 
Answer: No one is rejected. We have had a lot of calls, but have been able to handle them. The pre-screening questions help to eliminate wasting time so we can continue the screening process and see if people qualify for the study after all the preliminary work is done. That is based on them meeting their appointment times, sending in the paperwork and meeting all the other necessary criteria, etc. 
We Applaud Duke University…
But More Lives May Have Been Saved 
It appears this re-engineered polio virus therapy could have been introduced sooner had it not been for bureaucratic hurdles regarding human clinical research that Congress has to fix. Glioblastoma is considered virtually 100% terminal and no human should be denied access to an experimental therapy that has a credible chance of working. 
View the 60 Minutes segment about this new treatment for glioblastoma.
To inquire about qualifying for this Duke University study, call Brittany at 919-684-5301 and press option 1. If you meet eligibility criteria, Brittany will set you up to speak with the nurse who will continue with the medical screening process to see if you qualify to enter the trial.

Thursday, June 18, 2015

Nasal Down Sublingual To Go

Can you see....?

There is no chlorotoxin left!!! My nasal applications are completed. No more every four hour applications. No more hanging over park benches, and airplane seats with my head at the floor and feet on the ceiling. The things I have done to keep on this crazy schedule for the past few years has been wild. Everything has centered around the applications, all of my sleep, my food and drink, all of it.

I still have the oral applications for a few more days, but when that's over Dan and I will celebrate and high five, and maybe do a special dance in the living room, or maybe on the lawn. I will sleep in for once (maybe twice) and nap whenever I want. That's the most joyous part of this new chapter. I will enter a stage of full restfulness. And it is so needed. I'm never fully rested, and it effects the seizure activity. Maybe this is going to be the end of my seizures. What about that! Why not, really? It could be the saving grace. I'm just exhausted from tracking all of this stuff. A break. Wow. A break to celebrate and all I want is to be able to sleep. I may sleep for four days consecutively when the mouth venom ends next week. Glorious. I am counting down the days. I'm coming back into the land of the living, and it has never felt so perfect.

I never thought I would get back to being excited for my tens and tens of pills multiple times a day. Aaaaah the good life of pills upon pills upon pills. 

I don't know what I'm doing, but I hope I'm able to do it well. That this cocktail of approaches bode well for my body. That I may heal.

It's a new era, and I will evolve with the times.

I'm still soaking it up. 

Tuesday, June 9, 2015

To The Moon!

Do you guys remember that the year I was diagnosed (2010) I was training for an Olympic Triathlon? Well, obviously that crumbled, but this winter I decided to use my good health to take a tour of not what could have been - but is about to be. I don't know if that makes sense, but what I'm trying to say is that I'm snatching up opportunities to challenge myself; to get back to living the life I was born to enjoy. That includes challenging myself physically like the mad runner that I always was.

One thing that I've learned about myself is that competing, although awesome, isn't as fun unless you don't take yourself too seriously. Wow, how is it that I can speak in double negatives, yet I can never, for the life of me, understand it when others do. (Or maybe that wasn't a double negative. The mystery is on). I digress. So, a year or so ago, someone stole my bike, the bike we would use for speed and comfort. But with friends like ours, it is of no surprise that my buddy Laura lent me her 6 speed beach cruiser to galavant around the hoods of Seattle. She's rusty, but trusty, and when I hit the never expecting bump from our evergreen roots, the bell dings on its' own. I am a sight to see, I'm sure, if not for a lesson in humility.

Next month, I am coming up on the 1500 meter swim (haven't swam since dunking myself in the sound on Saturday and it was a real in and out moment), the 25 mile bike ride (just imagine the cacophony of dings as I race around the course), and the final 10k which is about 10 times longer than I've been running. Not to mention this race is at Lake Chelan where it will easily be 90 degrees by early morning. Dan has gallantly decided to join me, although I don't know how seriously he is planning on taking it. He may leave me in a swirl of bubbles and dust.

From This:

To this:
My Trusty Medicine in The Basket At All Times

On Saturday, Dan trained me down to the farmers market, and back home. Everyone needs a good coach. No joke, my balance is still a bit off from all the brain surgeries, but I'm confident. Dan even made a little video, sneaker that he is, and I can't stop laughing about it. My goal to finish the Olympic Triathlon is to complete in under 3.5 hours. I'm being modest though, I really think I'm going to easily make the three hour mark. (I hope you can literally hear me laughing as I wrote that.) Set the goals high right!? To the moon!

I may not be living the way I thought I would, but good God, I'm having some freaking fun every single day. And I realize that life is more than just having fun, but sometimes it's really exactly what you need.

If you'll be in the Chelan area the race is July 18th, a Saturday. I assume it will be a zoo, but if you're around you'll know me by my uncontrollable dinging, and ahead of its' time aerodynamic helmet. (Sarcasm.)

Thursday, June 4, 2015

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.

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