Monday, November 23, 2015

“Only four (4) U.S. Food & Drug Administration-approved therapies in the last 30 years”

That’s quote from the National Brain Tumor Society website posting regarding “Clinical Trial Endpoints”:
Does four (4) seem low to you? It seems low to me.

The NBTS posting puts that in perspective: “With nearly 700,000 Americans living with a brain tumor, and only four (4) U.S. Food & Drug Administration (FDA)-approved therapies in the last 30 years, and no cure – the needs of the brain tumor community are clear. Brain tumor patients need new therapies that will either eradicate their brain tumor or better manage the tumor and its manifestations; as many brain tumor patients also experience adverse changes in their physical, cognitive, and psycho-social well-being which significantly impacts their ability to maintain ‘normal’ lives while receiving treatment.”

A couple of numbers popped out of this paragraph and uncomfortably whacked my eyeballs: “four (4)”, “30 years” and “700,000”.

We continue to spend significant $ (and $$$) on research and have only got four (4) new approved therapies in the last 30 years? What’s going on?

While I’m not smart enough or insightful enough to diagnosis this issue, I think part of it traces to Clifton Leaf’s observation that “the public’s immense investment in research has been badly misspent”. He notes that scientists seldom collaborate and share their data, why new drugs are so, so expensive and why young scientists are “…now abandoning the search for a cure.”

If you want to know more I highly recommend that you read his well-researched and documented book, “The Truth in Small Doses”:

At the same time, I am more than glad that the NBTS is attempting to bring all the disparate parties together to, well, work together.

It’s about time.


PS - Sorry, I just don't have the energy today to write the right amount of outrage or incredulity into this post. Feel free to add your own.

Monday, November 16, 2015

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:
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 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

Wednesday, November 11, 2015

Brain Training Evaluation Checklist

There seems to be a zillion brain training programs. Some famous one have commercials and are pretty well known for their online training, e.g. Lumosity. Some provide toys/games that you can buy and try in a store, e.g. Marbles, the Brain Store. Many are apps of all shapes and sizes.

So how do you know which program  to buy, use or believe?

Luckily, the smart folks at SharpBrains have this good advice for picking and choosing you can read their advice below or whack this URL into the browser of your choice:

“Questions to Evaluate Brain Fitness Programs and a brief explanation of why each question is important:

1. Are there scientists, ideally neuropsychologists, and a scientific advisory board behind the program?
Neuropsychologists specialize in measuring and understanding human cognition and brain structure and function.

2. Are there published, peer-reviewed scientific papers in PubMed written by those scientists? How many?
PubMed is a service of the U.S. National Library of Medicine that includes millions of citations science journals. If a scientist has not published a paper that appears in that data­base, he or she cannot make scientific claims.

3. What are the specific benefits claimed for using this program? What specific cognitive skill is the pro­gram training?
Some programs present the benefits in such a nebulous way that it is impossible to tell if they will have any results or not. “Brain training” itself is a limited benefit, because activities like gardening or learning a new language provide “brain training” too…you need to see something more specific, like what cognitive or emotional skill that program is aimed at enhancing.

4. Does the pro­gram tell me what cognitive or emotional skill I am exercising, and is there an independent assessment to measure my progress?
The ques­tion is whether the improvement experienced in the program will transfer into real life. For that to happen we need assessments that are distinct from the exercises themselves.

5. Is it a structured program with guidance on how many hours per week and days per week to use it?
Cognitive training, or brain training, is not a magic pill. You have to do the exercises in order to benefit, so you need clarity on the effort required.

6. Do the exercises vary and teach me something new?
The only way to exercise important parts of our brain is by tackling novel challenges.

7. Does the program challenge and motivate me, or does it feel like it would become easy once I learned it?
Good mental exercise requires increasing levels of difficulty.

8. Does the program fit my personal goals?
Each individual has different goals and needs when it comes to brain health. For exam­ple, some want to manage anxiety, others to improve short-term memory.

9. Does the program fit my lifestyle?
Some brain training programs have good short-term results but are very intense. Others may be better over time.

10. Am I ready and willing to do the program, or would it be too stressful?
Excess stress reduces, or may even inhibit, neurogenesis - the cre­ation of new neu­rons. So, it is important to make sure not to do things that stress us in unhealthy ways.”

They have lots of other great brain building info on their website - see

Monday, November 2, 2015

I love infographics. I tend to think visually and infographics help me see interactions and interrelationships that I just don’t grasp when reading.

There is a great interactive infographic on the “Side Effects of Chemotherapy on the Body” posted at And while I post information about the terrors of brain tumors, I find that I’m not very good at reporting on the side effects of chemo treatments, which are horrible, horrifying and debilitating. 

The good folks at have boiled down this information into bite-sized pieces that victims, caregivers, friends and families can more easily digest and understand.  The graphic above isn’t interactive or as informative. So whack this URL - - into your browser and get great information that us non-medical professionals can understand.

If you are a reader, I’ve always thought that the chemo section of the book “Life, on the Line” by Grant Achatz and Nick Kokonas, does a great job of explaining the pain and suffering of trying to survive chemo as well as anything I’ve read.
If you’re a millennial, and like a story to go with your pictures, I recommend “Terminally Illin’ – ‘Chaos in Humanhattan’”.  Here’s a link to my blog post on that wonderful manga-like story:


PS – I didn’t find this infographic by myself. Ms. Nicole Lascurain of sent it to me. And while I don’t believe she’s part of some nefarious plot, the website does have advertising. So please be sure to read with care.

Saturday, October 31, 2015

“Are you a patient or caregiver? We need your help!”

I got this request from a healtheo360  email:

“Are you a patient or caregiver?  We need your help!

We have partnered with a team of medical artists and designers who are currently developing patient and caregiver educational materials.

We are looking to receive feedback on the draft materials that we have developed.  With your feedback, we will be able to update and improve the materials so that they better meet the needs of patients and caregivers, just like you.

We need your help and expertise to make these educational materials better, so we created two simple questionnaires to gather your feedback for patients living with lung cancer or melanoma and their caregivers.

The questionnaires will take about 10 minutes to complete.  All responses will be kept confidential.”

If you are interested, here’s the link:

If you want to know more about healtheo360, here’s a link to their website:


PS – And here’s a blog a wrote about healtheo360 previously: