Ependymoma Awareness Day: April 18, 2013

One of my favorite cancer fighting efforts is Ependymoma Awareness day. That's the day when The CERN Foundation releases a gazillion butterflies, bought butterfly by butterfly, as a fund-raiser to support research to fight this deadly disease?

So what’s Ependymoma? Here’s some Ependymoma Fast Facts

• An ependymoma is a rare type of primary brain or spinal cord tumor
• An ependymoma is a rare type of glial tumor; glial cells are the supportive cells of the brain
• Primary brain and spinal cord tumors are those that start in the central nervous system (CNS)
• These tumors are classified and graded according to their appearance when viewed through the microscope
• Ependymomas can be found in children and adults

While the facts are enlightening, I also find them somewhat dry.  So I went to the “inspiration” section of the CERN Foundation website - http://www.cern-foundation.org/Content.aspx?id=528 – and read some very human, especially touching and particularly poignant stories about kids and adults fighting a seemingly relentless, horrible disease.  Spoiler alert: these aren’t dry facts. They are moist-eye stories: stories with heart, stories about brave kids and parents, and far too many stories with sad endings.

Why butterflies?

As the CERN Foundation spokesperson said last year, “To represent renewal, inspiration and hope.” 

If you pledged last year, please renew your pledge again this year.  I have.

Image credit: <a href='http://www.123rf.com/photo_8925670_a-beautiful-monarch-butterfly-with-vibrant-color-feeding-on-a-lantana-bloom.html'>cheryledavis / 123RF Stock Photo</a>

Pleural Mesothelioma & Susan Vento

I recently received the following email and post it for your consideration.

Hello John,

My name is Susan Vento. My husband Bruce was a member of the US House of Representatives—until October 10th, 2000, when everything changed. Bruce died of pleural mesothelioma—a rare disease caused by asbestos exposure that kills 90-95% of those who have it. Not many people know about this terrible disease, which lead me to reach out to you; I noticed that you have an influential cancer site full of great information. I am hoping you will help me spread awareness about asbestos cancers and help to protect the rights of those who have been affected by mesothelioma and other cancers. 

I am spokesperson for a great online resource called the Cancer Victims’ Rights Campaign (cancervictimsrights.org) that fights to protect cancer victims and their families. I wrote a blog piece (http://cancervictimsrights.org/my-story-opposition-to-the-fact-act-susan-vento/) and would love if you could read it, share it and incorporate your thoughts. Your support, and the support of your online community, can make the difference to ensure justice for all cancer victims and their loved ones.

Thank you for joining me in my fight to educate people about such a deadly disease. Our ultimate goal is to help those who have suffered from all forms of cancer in their struggle to seek health and justice.  

Best,

Susan

Reuters Special Report: Behind a cancer-treatment firm's rosy survival claims

Here’s a story that I want to make sure US cancer victims have a chance to read. If you’re not from the US, this might be a bit of a surprise for you. 

The following quote gives you the core of the story: “A lot of doctors, hospitals and other healthcare providers in the United States decline to treat people who can't pay, or have inadequate insurance, among other reasons. What sets CTCA (i.e. Cancer Treatment Centers of America) apart is that rejecting certain patients and, even more, culling some of its patients from its survival data lets the company tout in ads and post on its website patient outcomes that look dramatically better than they would if the company treated all comers.”

Here’s a link to the story by Sharon Begley and Robin Respaut which was first published on March 6^th: http://www.reuters.com/article/2013/03/06/us-usa-cancer-ctca-idUSBRE9250L820130306  

PS – Somehow the name, Cancer Treatment Centers of America, makes me wonder if this is a franchise operation. For example, is there a Cancer Treatment Centers of Russia?

Meningioma Recurrence Rates 10 – 30%

If you’ve had a meningioma brain tumor, know somebody who’d had a meningioma brain tumor or read the on-going concerned dialogue on the ABTA’s Inspire website about meningioma recurrence, you know that recurrence is a concern.

Actually, “concern” is an understatement. The emotions that come to mind when I read the community’s dialogue on this subject range from fear to distress to apprehension.

My own trepidation (nervousness? disquiet? alarm?) increased significantly when I read that the recurrence rates are somewhere in the range of 10 to 30% on the Neurosurgical Medical Clinic site: http://www.sd-neurosurgeon.com/neurodiseases-meningiomas.php

I mean, really, most of the Chicago Cubs starting position players hit on the low side of that range.

This statement also spooked me “However, even with total excision, recurrence rates of 10% to 30% are reported, depending upon the length of follow-up.”  Yikes! The-Good-Doctor (my exceptional neurosurgeon) was only able to snip out 70% of my tumor. Does that make my odds of reoccurrence higher? (Say, something to Wilt Chamberlin’s free-throw shooting percentage?).

The site goes on to note that “Multiple meningiomas occur in 5% of patients…” Acwwk! I had enough trouble with one extra-large tumor, I can only imagine what would happen if I had multiple meningiomas.

I think what this all means, for me, is that I need to stop scaring myself with all these potentially nasty outcomes and do something much more calming, like watching Axe Murderer 5: Now Sharper Axes.

PS – Here’s a link to the Inspire website on-going conversation: http://www.inspire.com/groups/american-brain-tumor-association/discussion/statistics-on-meningioma-growth-rate/?reply_sort=asc&page=1#replies

Image credit: <a href='http://www.123rf.com/photo_6003153_x-ray-human-head-with-cerebral-tumor-in-brain.html'>eraxion / 123RF Stock Photo</a>

Great Deal on the SHARPBRAINS 2012 Virtual Summit

Yes, you read that right, SHARPBRAINS is offering a good deal on the sessions from last year’s virtual summit. How good of a deal? $15. 

So what do I get for my hard-earned $15?

According to the email I received, I would get “…more than 25 hours of exclusive presentations from over 40 lead­ing minds as they discuss the latest on applied neuroplasticity and brain health. These presentations, which took place during the 2012 Sharp­Brains Virtual Summit, shed light on some of the most important questions about the current and future state of brain health and wellness:

• How can the health industry better incorporate the body's most vital organ -- the brain?
• How are consumer beliefs and behaviors towards brain health and brain training evolving?
• Which professional groups are ideally positioned to become "brain fitness coaches"?
• How can neuroscience inform special education?
• How can Big Data and global internet access transform brain health practices?”

 The downside? Well, the presentations are a year old and in this business, a lot happens in a year. On the other hand, if you’re in need of better brain fitness, and I am, this looks like a cheap way to get some solid info. 

Here’s a link: http://www.sharpbrains.com/summit/register/