Wednesday, October 1, 2014

Silicon Valley Brain Tumor Walk, Saturday, September 27

Laurie Graham's Calf Tattoo,
with Updates 

Laurie commissioned  the original in 2012,  to commemorate ten years since she was diagnosed with an inoperable oligodendroglioma. In the two  years since,  she's added two hash mark to commemorate survival. You can read more about her on her blog.

After the Walk,  a Survivor's Story 
Laurie said "Brain tumors are worse than most cancers because every case is unique.  For that reason it's important to form bonds.  One of the most important things that can hold us together is hope.  Every time I feel like giving up, my doctor comes up with something new for me to try.  And don't be afraid to lean on family and friends — they really want to know what they can do to help."

Honoring Team Marvin

Team Marvin, twitter hashtag #teammarvinll, won the coveted team spirit award. Here's Marvin's story, as told by his wife Valerie on the team web site:  diagnosed with a glioblastoma … on his 32nd birthday in April 2014.  He underwent a craniotomy … and finished his initial round of chemotherapy and radiation …   I am walking for him, our son, our baby girl on the way  and to raise money to help find a cure 

    The Silicon Valley Brain Tumor Walk made a strong showing in its second year, attracting over 500 walkers, and garnering over $105,000 by the time those walkers had completed the course.  Jenifer Printess, the new Director of Events for the National Brain Tumor Society (NBTS), announced the totals from the podium.  She told us the NBTS will use our contributions to develop "policies and procedures" such as "new clinical trial endpoints," which presumably would streamline the FDA-approval process for promising treatments. Jenifer also said the NBTS is participating in a "research collaborative" whose goal is to double the glioblastoma (GBM) survival rate.  GBMs are the most common, and the most lethal, form of malignant brain tumor; patients can expect to live just fourteen months after diagnosis, and there have been only incremental improvements over the past decade.

     Despite frustration over slow progress on GBM treatments, brain tumor walks are a valuable opportunity to learn about new developments.
      NovoCure had a booth.  Their device, which kills tumor cells with magnetic fields, was approved by the FDA after clinical trials showed it was just as effective as Temodar, the current "gold-standard" GBM chemotherapy — that is, it helps only about one in five patients.
      OncoSynergy had a booth too.  Their flagship drug, OS2966, provides "multiple mechanisms of action that can be used for different types of cancer and at different stages," and has shown "preclinical efficacy in multitherapy resistant brain cancer."  It is currently being prepared for phase 1 clinical trial (i.e., to test that it does no harm). 
      StemCycle did not have a booth, but two of their officers, Matt and Pete were present.  StemCycle tailors treatment plans for individual patients, including diet plans.  Matt recommends the ketogenic diet, originally developed to treat epilepsy in children, as a good way to fight cancer.  The variant he likes is 75% fat, 20% protein, and 5% carbohydrates (compare to smooth peanut butter, per CalorieLab: 78% fat, 17% protein, and 13% carbohydrates).  The concept behind it is that if a diet is low in carbohydrates, ketone bodies replace glucose as the energy source for cells — and cancer cells cannot metabolize ketone bodies. 
      Finally, I had the chance to chat with somebody who gave me their not-too-well informed impressions of a 2012 phase 1 clinical trial that tested a cannabinoid named CBD (non-intoxicating) as a GBM treatment. This person agreed to put me in touch with someone who knew more about the trial and could provide details. However, it seems important enough to justify passing along third-hand impressions now, since many people believe the anti-tumor properties of cannabinoids are only overlooked due to drug law insanity (Jean and I were certainly in that camp). Just bear in mind that I'll likely post additions and corrections.
      Third-hand impression — the outcome did not demonstrate clinical effectiveness. The researchers speculated that this was because CBD was not present in the brain in sufficient quantity, and that a shunt delivering the cannabinoid directly to the tumor site might yet provide better results.  But nothing in this test supported the notion that the CBD inhaled with marijuana smoke is a brain tumor panacea. Of course that doesn't mean cannabis is not useful and important as palliative medicine, but that's a different question.

     Brain tumor walks are also a way to draw inspiration from how other people confront a terrible disease.  Everyone has a story to tell.
      Dr. Melanie Hayden, now a neurosurgeon at Stanford, recounted her story from the podium.  Her uncle was diagnosed with a GBM when he was thirty-five, the same age she is now.  He did not beat the odds.  Afterwards, her parents took her cousins into their household, and her uncle's fate inclined her toward treating brain cancer.
      Dr. Anne-Marie Carbonell, OncoSynergy's VP of Clinical Development, was known as "that doctor with the pink lipstick” when she was a neurosurgeon. Then "I went from doctor to patient.  A few surgeries and pacemakers later, I realized I could no longer return to the career I had been working towards for the last decade."
The hashtag is #cancersucks.
The turquoise t-shirt is for Mikey's Militia
      Dr. Shawn Carbonell, OncoSynergy's CEO and Chief Scientific Officer, is also an ex-brain surgeon.  He spent "18 years prepping for a career as an academic neurosurgeon," then abruptly abandoned his clinical practice to work full time on a cancer treatment idea that "burned a hole in my brain" (no tumor reference intended).  When he met Anne-Marie, and "found out she was single and was no longer in neurosurgery I made it my mission to both marry her and hire her."
Big Al's Team
      It's a sweet story, read more by following the Science Exchange blog links (above).  The Friday night date tradition for this happy couple is to discuss clinical plans for the family business.
      And of course there are the survivors, each and every one given terrible news by a doctor, that dreaded conversation; all present this day deciding that life means more than just survival, that part of their healing is to advocate for all brain tumor patients.
      And last, there are the families and friends of those who survive, and of those who did not. Few of us would object if you say we're also the least important element in the mix, that word comes up for us so often: It's the least we could do, go on the walk.  At least we designed catchy t-shirts and cute signs.  At least we can do something to show how much we love them.
      If our loved one did not survive, and we were very lucky, we found fresh words to tell them how deeply we loved them, while we still could.  If your loved one is surviving a malignant brain tumor, you may wish to consider trying your luck now.

1 comment:

  1. Matt, Thank You for your post. It is beautifully written and I appreciate your support so much.
    I'm really looking forward to working with you at future events.