A great conference for patients, caregivers, friends & family members

I highly recommend this conference. 

You will find great brain tumor surgeons, researchers, victims, caregivers, and friends and family members. I’ve found everybody who attends to be good listeners and full of honest advice and time to listen to you and your concerns.

Here’s the link: http://hope.abta.org/site/TR?fr_id=3521&pg=entry

The opening sentence of the email from the ABTA about the conference says “The ABTA’s annual Patient and Family Conference is where patients, families and caregivers come together to learn more about the latest advances in brain tumor research, treatment and care.” I want to highlight two important words “latest advances.”

If you haven’t been reading all the brain tumor news that’s been spilling out of research studies of late, here’s a good place to get a sense of all the new tools we have to fight brain tumors. The ABTA marketing folks have highlighted that in their first two bullet points saying:

• “Physicians will present the latest precision medicine treatment options and symptom management techniques for low-grade glioma, high-grade glioma and metastatic brain tumors

• Researchers and doctors will highlight treatment advances in neurosurgery, radiation and immunotherapy”

Importantly the conference includes “A special session for the newly diagnosed will cover how to navigate the early days of a brain tumor diagnosis and what information patients, families and caregivers would need to know in order to be empowered with information and resources to make informed decisions throughout their treatment and care.”

Please know that the conference costs $100. If you are a victim, caregiver or love one, I believe that you will find this to be a particularly good investment.

Killing GBM with Polio: 60 Minutes Episode Labeled “Breakthrough Status”

All you brain tumor victims, caregivers and victim friends and relatives should know that:

“On May 15, CBS 60 Minutes reported that a polio virus vaccine received breakthrough status from the U.S. Food and Drug Administration because of promising results in early studies conducted at Duke University. In an almost 40-minute newscast, CBS 60 Minutes shares perspectives from the researchers, and stories from patients and caregivers that highlighted their experience on the trial.”

“Breakthrough Status” is not lightly given by the U.S. Food and Drug Administration. To the best of my knowledge, this is unprecedented for a brain tumor therapy.

If you have a loved one suffering from Glioblastoma, watch this episode: http://www.cbsnews.com/news/60-minutes-fda-breakthrough-status-duke-university-cancer-therapy/

This is the second time I’m writing about this therapy.  I am compelled to write about it because a dear college friend of my wife and mine has just been diagnosed with GBM. GBM is a horrific, relentless, terrifying disease that strikes down wonderful people, fabulous people, important people indiscriminately and ruthlessly.

Historically, GBM victims have had almost no hope at all. Now, for the first time, there seems to be a path available to some victims. 

I cannot write anymore today, because if I do, I will start weeping and screaming and thrashing about like somebody or something is tearing my soul in two.

John

PS – In addition to providing a link to the episode, the segment’s script is also posted.

PPS – On this 60 Minute segment Scott Pelley is the correspondent. Denise Schrier Cetta and Michael Radutzky, are producers.

Novocure Announces GBMCommunity.com

I was recently contacted by Jacqueline Hong of the Chandler Chicco Agency who sent me a copy of a May 5^th press release saying “Novocure™ (NASDAQ: NVCR) announced today the availability of a new online resource to raise awareness of glioblastoma (GBM) and share stories of inspiration with the GBM community. An interactive exhibit featuring patients, caregivers, doctors, nurses and advocates will also be displayed within the coming months.”

You should know that I am conflicted about what I should do in these situations. Part of me understands that I am being contacted because, in addition to being the good guys that have developed this online resource, they are an oncology company who has products to sell. 

 

At the same time, it’s a nicely informative community-building website - www.gbmcommunity.com – which may help some poor brain tumor victim who is desperate for information and brain tumor community support.

With that being said, the press release also says “The website, GBMcommunity.com, features a mosaic of videos and images from the GBM community offering messages of hope and inspiration. The website also provides an overview of GBM and links to resources and advocacy groups.”

I was pleased to read that, “Novocure actively engaged members of the community to determine the resources they felt they needed most,” said Pritesh Shah, Senior Vice President, Americas. “This new website and exhibit were born from the GBM community and created with assets provided by the community.”

Let me know if you do or don't like reading about this kind of information in my blog.

John

Researchers find potential new treatment target for deadly brain cancer

That’s the title of an abstract from the Ottawa Hospital Research Institute. The summary says “A key player in brain tumor formation has been found that may lead to new therapies for a deadly and incurable cancer. The study is the first to show that a protein called OSMR (Oncostatin M Receptor) is required for glioblastoma tumours to form. Glioblastoma is one of the most deadly cancers, resistant to radiation, chemotherapy and difficult to remove with surgery.”

I don’t have anything to add to the quotes from the lead author, which I’ve cut and pasted in the following:

"The fact that most patients with these brain tumours live only 16 months is just heartbreaking," said Dr. Arezu Jahani-Asl, the lead author who performed this research largely in Ottawa while she was a postdoctoral fellow co supervised by Dr. Michael Rudnicki at The Ottawa Hospital and the University of Ottawa and by Dr. Azad Bonni from Harvard Medical School and Washington University School of Medicine. "Right now there is no effective treatment, and that's what drives me to study this disease." Dr. Jahani-Asl is now an assistant professor in the Department of Oncology at McGill University and a principal investigator at the Jewish General Hospital, with a laboratory dedicated to how glioblastoma develops.

Here’s a link to the article: https://www.sciencedaily.com/releases/2016/04/160425141536.htm

PS - Please excuse the the morbid black and white graphic, but I'm feeling awfully sad about this GBM and the near term options for victims which, at this moment, still seem to be slim and none. 

Copyright: <a href='http://www.123rf.com/profile_lightwise'>lightwise / 123RF Stock Photo</a>

GBM Brain Tumor Shrinking Molecule Found

“New Computational Strategy Finds Brain Tumor-shrinking Molecules” says the headline of an article posted, well, in a lot of place but I first found it here: http://www.biosciencetechnology.com/news/2015/11/new-computational-strategy-finds-brain-tumor-shrinking-molecules

 

The article starts out stating a sad fact, “Patients with glioblastoma, a type of malignant brain tumor, usually survive fewer than 15 months following diagnosis.”

But the article goes on to report that “…University of California, San Diego researchers developed a new computational strategy to search for molecules that could be developed into glioblastoma drugs. In mouse models of human glioblastoma, one molecule they found shrank the average tumor size by half.”

Now I’d like to make two points here. First, note the phrase “In mouse models of human glioblastoma…” So don’t expect it to be used commonly among us with human brains all that fast.

Secondly, please also note the quote “…one molecule they found shrank the average tumor size by half.”* I’d check my math on a calculator but I’m pretty sure that means by 50%, which is awesome, incredible, news-worthy and a reason for hope.

The article in bioscienetechnology.com includes important quotes that I don’t understand about their methodology from first listed author Igor Tsigelny, Ph.D., research scientist at UC San Diego Moores Cancer Center, as well as the San Diego Supercomputer Center and Department of Neurosciences at UC San Diego. 

To read the quotes and the rest of the article go to http://www.biosciencetechnology.com/news/2015/11/new-computational-strategy-finds-brain-tumor-shrinking-molecules