Wednesday, September 21, 2016

“New Report Shows Brain Cancer is Deadliest Childhood Cancer”

I found this headline and the latest brain tumor news upsetting, horrifying and painful: "Brain Cancer Now Leading Childhood Cancer Killer” -

I keep bumping into folks who have recently received bad brain tumor news. Sometimes they find me and sometimes I reach out to them.

Usually they just want to tell their story – their symptoms, diagnosis, etc. – to somebody who has an idea of what they are going through. It isn’t fun or easy or rewarding, its hard and depressing. But I feel like I need to give them a venue/listening ear/opportunity to talk to somebody who isn’t part of their family and friends network.

And then I read this: “Brain Cancer is the Deadliest Childhood Cancer.” That means some poor kid who hasn’t ever had a chance to have an adult life is going to have the opportunity of a lifetime, literally, snatched away from them. Thinking about it just makes me want to curl up into a little ball, roll into a corner and cry.

Alternately, I want to wail at the sky about the unfairness of it all. I imagine young parents being whacked upside the head with the worst news imaginable. If I were them, the pain would be unimaginable, unmanageable and unbearable; especially given the fact that they’ll have to “be strong” for their child and deny their own pain.

As the NY Times article points out, while that are more incidents of leukemia, brain cancer accounts for more deaths because we (that’s all of us including you and me) can’t figure out how to adequately fight this relentless nemesis.

If it sounds like I’m venting, I am. A close friend of ours is dying from GBM. All the usual inadequate treatments have failed to help this courageous, wonderful woman who grasped every joy out of life that she could.  

I want to close by saying that I believe that brain cancer has an insidious aspect to it that other cancers do not. Brain cancer destroys a fundamental element of who a person is. As brain function disintegrates, the person we knew and loved transmogrifies into a ghost of the person we once knew.

I hate it.

Copyright: <a href=''>nuiiko / 123RF Stock Photo</a>

Wednesday, August 31, 2016

Free Ependymoma Guide from the CERN Foundation

I hate Ependymoma. It's a vicious and unrelenting form of brain cancer that disproportionately attacks very young children and young adults.

Since we have a great friend who's fighting a very, very tough battle with brain cancer right now, so for me the wonderful work that the CERN Foundation is doing feels a light in a very deep and dark tunnel of darkness.

Our ability to Ependymoma isn’t great, although many scientists, including the wonderful ones supported by the CERN Foundation are trying their best to find a cure (more likely cures).

I thought you should know that I just received an email telling me that the CERN Foundation has published a second edition of their Ependymoma guide that you can get for free. Here’s the blurb from that email:

“If you would like to order a FREE copy of the guide, send the following information to Your name, mailing address, phone or e-mail. Indicate if you would like a pdf or mailed copy.”

Friday, August 26, 2016

“20 Must-Know Facts to Harness Neuroplasticity and Improve Brain Health”

As a brain tumor survivor, I am constantly on the lookout for ways to improve my brain health. I am also a sucker for lists on how to improve myself. So I found this list of “20 Must-Know Facts to Harness Neuroplasticity and Improve Brain Health” written by Alvaro Fernandez, CEO of SharpBrains, helpful, insightful and inspiring. Here’s a link:
  1. There is more than one “It” in “Use It or Lose It” -- our performance depends on a variety of brain functions and cognitive skills, not just one (be it "attention" or "memory" or any other).
  2. Genes do not determine the fate of our brains. Thanks to lifelong neuroplasticity, our lifestyles are as important as our genes--if not more-- in how our brains grow and our minds evolve.
  3. We need to pay more attention to Randomized Controlled Trials (RCTs) to verify whether any intervention causes an effect, and under what specific circumstances -- The media is doing quite a poor job, in our view, to educate the general public.
  4. The largest recent RCT (the ongoing FINGER study) and a 2010 systematic review of all relevant RCTs provide useful guidance: First, they report a protective effect of social and cognitive engagement, physical exercise, and the Mediterranean diet. Second, the average benefits at the population level appear quite limited, so we need to have realistic expectations.
  5. Physical exercise and increased fitness promote brain functioning through a variety of mechanisms, including increased brain volume, blood supply and growth hormone levels.
  6. Cardiovascular exercise that gets the heart beating – from walking to skiing, tennis and basketball – seems to bring the greatest brain benefits; thirty to sixty minutes per day, three days a week, seems to be the best regimen.
  7. Mental stimulation strengthens the connections between neurons (synapses), improving neuron survival and cognitive functioning. Mental stimulation also helps build cognitive reserve, helping the brain better cope with potential AD pathology.
  8. Routine activities do not challenge the brain. Keeping up the challenge requires going to the next level of difficulty, or trying something new.
  9. The only leisure activity that has been associated with reduced cognitive function is watching television.
  10. Brain training can work, putting the "cells that fire together wire together" to good use, but available RCTs suggest some key conditions must be met to transfer to real-life benefits.
  11. The brain needs a lot of energy: It extracts approximately 50% of the oxygen and 10% of the glucose from arterial blood.
  12. The Mediterranean Diet, supplemented with olive oil and nuts, is associated with decreased risk of cognitive decline.
  13. Moderate doses of caffeine increase alertness but there is no clear sustained lifetime health benefit (or harm).
  14. Light-to-moderate alcohol consumption seems to lower the risk of dementia.
  15. Taking "brain supplements" of any kind does not seem to boost cognitive function or reduce risks of cognitive decline or dementia, unless directed to address an identified deficiency.
  16. The larger and the more complex a person’s social network is, the bigger the amygdala (which plays a major role in our behavior and motivation). There is no clear evidence to date on whether "online" relationships are fundamentally different from "offline" ones in this regard.
  17. Chronic stress reduces and can even inhibit neurogenesis. Memory and general mental flexibility are impaired by chronic stress.
  18. There is increasing evidence that meditation and biofeedback can successfully teach users to self-regulate physiological stress responses.
  19. We will not have a Magic Pill or General Solution to solve all our cognitive challenges any time soon, so a holistic multi-pronged approach is recommended, centered around nutrition, stress management, and both physical and mental exercise.
  20. Having said that, no size fits all, so it's critical to understand and address individual needs, priorities and starting points.

Copyright: <a href=''>mrspopman / 123RF Stock Photo</a>

Monday, August 1, 2016

Latest Brain Tumor Celebrity: Gord Downie

I often re-post articles about celebrities because:
  • I sense that knowing a celebrity with a brain tumor somehow helps brain tumor victims feel like they aren’t the only ones fighting this wicked disease.
  • It draws attention to the need for a cure among the celebrities’ following which almost always expands beyond the brain tumor community of victims, survivors, doctors and the like.
  • It humanizes the impact of brain cancers.
So Today I ran across an article about Gord Downie from the Canadian Press who reports that “Canadian rock band the Tragically Hip begins what is being billed as its final tour after lead singer Gord Downie was diagnosed with a deadly brain cancer.”

If you are a Gord Downie fan, you may want to read about Glioblastoma (GBM) which is the brain tumor disease the article reports that he has. :-(

Monday, July 18, 2016

“New Liquid Aspirin Found To Be Ten Times More Effective In Killing Cancer Cells Than Chemotherapy”

This headline in “Science World Report” my eyeballs and didn’t let go until I read the very short article -
I then tracked down an article posted on - that gave more details. The article’s headline reported that “At a scientific meeting this week, researchers hail their evidence about a new soluble drug containing liquid aspirin as a potential breakthrough in the treatment of brain tumors.”

In this article, by Catharine Paddock PhD, reports that at the “Brain Tumours 2016 - From Biology to Therapy” meeting, held in Warsaw, Poland, 27-29 June, 2016 the news was announced.

An important part of the announcement was the claim that Prof. Geoff Pilkington and Dr. Richard Hill have figured out how to cross the “blood-brain barrier.”
Paddock writes that, “Researchers trying to develop cancer drugs for treating brain tumors have found it very difficult to create compounds that pass through the blood-brain barrier. Many cancer drugs that can defeat tumors in other parts of the body cannot pass through.”

Apparently, this new breakthrough enables cancer drugs to do just that.

Paddock goes on to report that “They ( i.e. Prof. Geoff Pilkington and Dr. Richard Hill) say their findings suggest the new drug could be highly effective against glioblastoma, one of the most devastating and most common type of brain tumor in adults say their findings suggest the new drug could be highly effective against glioblastoma, one of the most devastating and most common type of brain tumor in adults.

I suggest you read the entire article.