Defeat GBM Research Collaborative

This is a youtube video about the Defeat GBM mission.

The video is a bit slow and bit wonky for those of us interested in fast talk and visual action but, at the same time, somehow appropriate.

According to the National Brain Tumor Society website, “Glioblastoma multiforme (GBM) research is on the cusp of genetic and molecular discoveries that will forever alter current diagnostic, prognostic, and therapeutic achievements. A highly aggressive and complex brain tumor type, GBM tumors are also one of the most devastating forms of cancer, affecting thousands of Americans each day.

To address this growing need, the National Brain Tumor Society in 2013 launched the Defeat GBM Research Collaborative, a multi-faceted and concentrated research-based effort, which aims to double the five-year survival rate of GBM patients -- in just five years. The Initiative will drive the advancement of this therapeutic development area to better understand how to combat its resistance and adaptability, and deliver new and effective treatments to improve patient survival.”

Why I'm not afraid of dying: CNN Story about David Menasche’s Brain Tumor

I love this guy. I just watched the CNN story about David, his  brain tumor and his decision to spend whatever time he has remaining to “travel around the country to reconnect with former students.”

Here’s what you need to know about David:

“My classroom was my sanctuary, so on the day before Thanksgiving in 2006 when I was diagnosed with an incurable form of brain cancer at 34 and told I had less than a year to live, I did what I always did. I went to school. I needed my students to know that I trusted them enough to share life's most sacrosanct passage. Death.

They, in turn, helped me to live in the moment and spend whatever time I had left living well. For six years, the only time I wasn't in class was when I was undergoing brain surgery. I never avoided the topic of my cancer, glioblastoma multiforme, with my students, but it was not something I dwelled on, nor did they.

I covered my bald, lacerated head with a woolen hat and scheduled chemotherapy around my classes, and I got so good at being sick that I could run to the bathroom, heave into the toilet, flush, brush my teeth and fly back to class in under three minutes. They pretended not to notice. During that time, I even won "Teacher of the Year" for my region. I was grateful for every breath and felt as if I could live that way forever.”

Here’s a link to the CNN article & video: http://www.cnn.com/2014/01/08/opinion/menasche-teaching-life/

National Brain Tumor Society and the Avastin Clinical Trials

While I love to tell you all about progress in treating brain tumors, I think it’s equally important to repost news like the NBTS’s comments on the Avastin Clinical trials.

“National Brain Tumor Society is deeply disappointed in the recently announced results of the AVAglio clinical trial. This trial revealed that Avastin (in combination with standard of care treatments) did not significantly prolong the lives of newly diagnosed GBM patients.

We are equally concerned with additional findings from a large, National Cancer Institute (NCI)-supported clinical trial conducted by the Radiation Therapy Oncology Group (RTOG). Similar to the AVAglio trial, the RTOG study did not show statistically significant increases in overall survival for newly diagnosed GBM patients taking Avastin in combination with standard of care treatments. Data from the AVAglio and RTOG studies collectively have provided mixed results on issues such as progression-free survival (i.e. a measure of tumor growth in response to a therapy) and quality of life, which will require careful and further analysis to better understand their full meaning in terms of patient care.”

You can read the full article here: http://www.braintumor.org/news/latest-nbts-news/nationalbraintumorsocietyrespondstoresultsofavastinclinicaltrials.html

New GBM Vaccine Clinical Trials

Here’s a snippet from a recent University of California Irvine Medical Center press release which says that “UC Irvine doctors are enrolling patients with the deadly brain tumor glioblastoma multiforme (GBM) in a clinical trial of a vaccine that may prevent the cancer’s return or spread after surgery.”

What caught my eye was the following quote from Dr. Daniela Bota, neuro-oncologist and co-director of UC Irvine’s Comprehensive Brain Tumor Program: “Our goal is to train the immune system to recognize and attack the cancer.” Dr. Bota will lead the Phase II trial at UC Irvine of DCVax, which was associated with increased survival in a previous study.

That’s important because, according to Dr. Bota, “The standard of care prolongs survival, but it does not fully destroy the cancer.” The article reports that Bota believes the vaccine can help eliminate remaining tumor cells and further extend patients’ lives. Only 10 percent of the 12,000 to 14,000 people annually found to have glioblastoma multiforme survive five years.

Five years? I think I know college students that are still sophomores after five years. So to my way of thinking, five years seems awfully short.

I read about GBM victims on the Inspire website all the time and it never seems like good news. You can read the same postings I do at: http://www.inspire.com/groups/american-brain-tumor-association/?ref=as&asat=52643532 -

The study is sponsored by Tocagen Inc.  and, as of June, it seems like the study was still recruiting participants. If you’re interested, see http://clinicaltrials.gov/ct2/show/NCT01156584?term=tocagen&rank=2

Keith Black M.D. - Brain Surgeon (book review)

If you ever wondered what it’s like to be the surgeon, instead of the patient, this is the book for you.

While much of it is about his meteoric career, his description of specific cases brings a very human presence to the science of the diseases and his efforts to “cure” patients. I put cure in quotes because in many brain cancer instances its more about giving patients more months, than years, to live.

With that as a cheery background I also liked that he discussed a variety of tumors: from glioblastoma multiforme to a clival chordoma to astrocytoma, among others.

His comments on “benign” versus “cancer” also resonated with me. He talked about a specific case of a young woman with acoustic neuroma and noted that “Tumors like this one are a good example of why the terms ‘benign’ and malignant’ are not always useful.”  He wrote that “While the tumor was termed ‘benign’ because there was no risk that it would spread to other areas of the brain. Nevertheless, as it continued to grow and press on the brain stem, it would be every bit as deadly as the most aggressive glioblastoma multiforme.”

For you folks interested in ependymoma, he also discussed the case of a young Ethiopian boy who was brought to the US by the Save the Children charity. The boy had a huge posterior fossa tumor (an ependymoma) and, basically, no insurance. This led into a frank discussion of hospital finances and ethics.

Does he have a bit of an ego? Yes. Personally, I think that’s a good thing in surgeons as I want them to be 100% confident when they start snipping tumors from my brain. I also think he rather deserves to have a bit of an ego, especially given his research accomplishments.  I’ll let you decide if his ego/achievements gets in the way of his story.

 
Here’s a link to the Amazon posting and reviews: http://www.amazon.com/Brain-Surgeon-Inspiring-Encounters-Mortality/dp/0446198145/ref=la_B001O4694W_1_1?ie=UTF8&qid=1347026895&sr=1-1