Central Brain Tumor Registry of the United States

When I talk to victims and caregivers and friends and family members of brain tumor victims I get a lot of questions, questions like:

• What are my chances? (Of survival)
• How many people get this!? This is usually asked loudly or poignantly or despairingly so I added an exclamation point.)
• Why me? (What did I do wrong?)

Horribly and embarrassingly, I usually have no answers or, at best, pretty bad answers.

Worse yet, as a society/national/people don’t seem to have many answers to these pointed questions begging to be answered.

But today I did stumble across the “Central Brain Tumor Registry of the United States“ which provides some answers to those who live in the US and worldwide: http://www.cbtrus.org/factsheet/factsheet.html

The answers it provides tend to be the cold, heartless facts of brain tumors, how many cases per year, which age groups, males versus females, etc.

Here’s some numbers that jumped out at me and hit me hard right between the eyes: “An estimated 68,470 new cases of primary malignant and non-malignant brain and CNS tumors are expected to be diagnosed in the United States in 2015. This includes an estimated 23,180 primary malignant and 45,300 non-malignant that are expected to be diagnosed in the US in 2015.”

I found that depressing. 68,470 is the population of a good-sized city. The idea of an entire city of brain tumor victims makes me cringe.

Perhaps most depressing are the bleak five-year survival rates which are tiered by age. For example, the five-year relative survival rates following diagnosis of a primary malignant brain and CNS tumor for somebody 55 to 74 years old is 17.7%. 17.7%? 17.7%!

Since my wife and I have a very, very good college friend who fits that demographic, right now I’m very, very sad. L

If you’re interested go to the link and have a look. Personally I found a lot of data and not hardly any answers.

Walnuts Every Day (might) Keep Alzheimer’s Away

Go grab a walnut from your kitchen shelf and take a quick look at it. Looks surprisingly similar to a brain, doesn’t it?

Well it turns out that looks might not be deceiving as researchers at the New York State Institute for Basic Research in Developmental Disabilities (phew, that’s a long name) said that experiments with Alzheimer’s-susceptible mice found that subjects consuming walnuts showed significant improvements in learning skills and memory compared to mice without walnuts in their diets.

I learned this from an article by Fredrick Kunkle in The Washington Post: http://www.washingtonpost.com/national/health-science/walnuts-appear-to-delay-onset-of-alzheimers-disease-new-study-finds/2014/10/20/d357bc7e-58a6-11e4-b812-38518ae74c67_story.html

 

Kunkle reports that “the study also found improvements in motor skills and reduction in anxiety.” He also noted that the equivalent walnut consumption for humans would be about “1 to 1.5 ounces of walnuts a day.” To my ears, “1 to 1.4 ounces” doesn’t sound like some huge challenge. It sounds like a small handful on my oatmeal every morning.

Interested? 

Suspicious? 

Want to believe but need more proof? 

Or are you just a curious engineer/scientist-type who needs more info? 

In any of those cases, here’s a link to the abstract in the Journal of Alzheimer’s Disease: http://iospress.metapress.com/content/n644184610325684/  

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ABTA Webinar: Nutritional Supplements for Brain Tumors

I constantly see brain tumor victim and caregiver blog conversations about diet and supplements. Chia seeds, berries and the Ketogenic diet are just a few of the raging topics folks are grabbing onto with gasping hope.

So the American Brain Tumor Association’s December 11^th webinar entitled “Nutritional Supplements for brain tumors” - https://www3.gotomeeting.com/register/924039574 - seems both important and timely.

If you haven’t watched a webinar, no worries. If you have access to the internet, you can watch. You can watch with friends, from a hospital room or from you living room wearing pajamas. I’ve watched several webinars (no, I didn’t wear pajamas) and have found them to be helpful.

Part of the reason that I like them is that I like to see and listen to folks (like  Dr. Chaudhary) than I like to read stuff, even important stuff. 

 

Here’s the ABTA’s promotional copy about the seminar:

“Many brain tumor patients have questions about which supplements they can take, should take, or can safely take with other medications and treatment regimes.  What happens if your doctor does not have the answer or is not open to this type of discussion?  There are other brain tumor patients who will choose to take a regiment of supplements on their own without trying to discuss it with their doctor at all. Your doctor and healthcare providers are your team members in your brain tumor journey, you need to partner with them in your care. 

Join Rekha Chaudhary, MD, assistant professor of medicine at the University of Cincinnati Neuroscience Institute as she presents Supplements for Brain Tumors.  Dr. Chaudhary will present the research behind nutritional supplements, which ones to avoid, which ones will help with various side effects related to brain tumors, and if there are any new studies on the horizon involving brain tumors and supplements. This webinar includes an online Q & A session with  Dr. Chaudhary. The webinar will also be recorded and the link will be sent to all registrants after the live session. Please make sure to enter a valid email address when registering to ensure you receive the link to view the webinar. “

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College Basketball Brain Tumor Victim Gets Shots of a Lifetime, Makes Both

Brain Tumor victim news generally comes in two forms: bad and worse. Occasionally, though, this worst of diseases brings out the best in people. When I mean the “best,” I mean “compassion”, “empathy” and “caring” that sometimes can only be seen or read or experienced with a smile on your face.

Since this brain tumor business doesn’t bring many smiles, especially lately, here’s a story about brain tumor victim Lauren Hill receiving the Pat Summit Award this past weekend which should do just that:http://abcnews.go.com/Sports/wireStory/player-brain-tumor-fulfills-basketball-dream-26642152

AP Writer Gary Graves writes about a game where inoperable brain tumor victim Lauren Hill, got a chance to make a couple of baskets. In fact, according to Graves, “…the freshman forward for Division III Mount St. Joseph's stirred a capacity crowd just by taking the court.”

He went on to write that “Much depends on Hill's health and energy as she deals with an inoperable brain tumor that has left her with just months to live. In between making two layups that started and finished Sunday's 66-55 victory over Hiram College and brought a crowd of 10,250 to its feet she spent much of her inspiring game sitting on the bench wearing sunglasses and headphones.”

That’s because “Hill's condition has made her extremely sensitive to sensations her teammates and opposing players take for granted, but she still enjoyed the bright gym and the cheering crowd. And she certainly savored her two baskets on a day she will never forget.”

I hope you read the story and it brings a smile to your face, too.

John

PS – And here's a link to the NBC News segment by John Yang on Lauren that appeared last night:  http://www.nbcnews.com/nightly-news/terminally-ill-college-player-lauren-hill-lives-college-hoops-dream-n240301