“Living Each Day to the Fullest” – diagnosed with Ependymoma at age 4

I heard some good advice from a guy whose wife’s best friend was diagnosed with glioblastoma, Grade 4, it was something like “enjoy every day.”

I had a hard time with that advice for a while – how could they enjoy life knowing that she had this horrible disease eating away at her, inexorably dragging her into the grave?

I now think differently about this advice. I don’t believe the advice is trite or Pollyanna-ish or divorced from reality. I think its sound advice that reminds us all to cherish what health and family we have while they are with us. 

I know of no other story that tugs on my emotional heart strings as hard as stories about children with cancer, like many of the Ependymoma stories you’ll find on the CERN website.

I’ve attached a link to one such story that brings this idea to life - a story about little four-year-old “Sophia L.” with Intramedullary Ependymoma. You can read about her and her mother here: https://cern-foundation.org/?page_id=6411

Latest GBM Insight: Immune Genes Identified that Affect How Long Victims May Live

The lead sentence from an article written by Robert Preidt says it best “Researchers have identified immune genes that may affect how long people live after diagnosis with a common type of brain cancer.” See https://www.nlm.nih.gov/medlineplus/news/fullstory_159031.html

He goes on to quote study auther study author Dr. Anhua Wu, of First Hospital of China Medical University in Shenyang, China  who said "We've had luck with other types of cancer in removing the brakes on the immune system to allow it to fight the tumors, but this has not been the case with glioblastoma".

My scatological reaction is “no shit.”

Yet, it’s an important step that no one else has taken.

Preidt goes on to note that “If confirmed in other studies, the researchers say their findings could lead to improved treatment in the future.”

Here’s another important insight from Preidt’s article that, one hopes, identifies a tipping point: “Dr. Rifaat Bashir, a retired neurologist in Reston, Va., wrote an editorial accompanying the study. ‘The looming question in brain cancer research today is whether the launch of immunotherapy will help control an uncontrollable disease,’ Bashir said in the journal news release.”

"While this study does not answer this question, it brings us one step closer to believing that one day we will be able to exploit the immune system to better treat glioblastoma," Bashir noted.

The report was published online May 25 in the journal Neurology - http://www.neurology.org/content/early/2016/05/25/WNL.0000000000002770.short?sid=9afcf6d4-b9f2-4f7f-b9dc-2dcf638cb84d


PS - According to the stock photo site from which I purchased this 3D animation the keywords describing this visual include brain, cancer, cancer cell, dead body, illness, and somewhat surprising to me ""beauty and health" 

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

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.