Thursday, October 18, 2012

CHEMOBRAIN, NFL, GRANTS, RESEARCH, ETC

What is it like to have my particular variety of chemobrain?  For starters, I get to write a title like that and have people say, "She's lost her mind. Completely. Lost."  And then, I get to somehow tie all of that and even more, into a neat little package.  After a long winded mess of information, a few twists and serendipitous turns, it will be a wrap.

For me, it's the ADD component that has taken up residence in my brain that gets in the way of my life.  I'm thrown off track and it can happen all too quickly and with minimal distraction.  Case in point?  This.  This?  This particular blog entry. I'll cut myself a little slack for reasons mentioned a few days ago but I've had this blogpost ready to go for at least two weeks.  Considering my whole reason for blogging was to reach out to the chemobrain crowd, one would think this should take priority.

I have news.  And I'm holding out.  Previously, I mentioned I participated in a clinical study using a specific software program to see if it would have a lasting effect on improving my working memory and addressing some of the other issues (FOCUS would be a really great one, for starters) attributable to the mess in my head.  I also shared a link to results that were presented by a researcher at Stanford.  She filled her study with the help of the Army of Women database.  That study also examined the benefits using a different software program.

Recently, the complete results of yet another study were published in the journal Breast Cancer Research and Treatment. Highlighted in Science Daily, the research of Diane M. Von Ah, Ph.D. points to the possibility that memory and thought processing speed may be improved though the use of a similar software program.  Dr. Von Ah explains a larger study will need to be performed to confirm her findings.  The content of the Science Daily article is reprinted below.  You know.... those pesky potentially broken or outdated links......And my OCD.

I suspect they are on to something with these programs.  I used CogMed which I enjoyed.  I have extension training for another 11 months.  The downside to CogMed, it requires "coaching" under the guidance of a neuropsychologist and it's costly.  As of now, it's not possible to sign up for CogMed and pay a subscription fee.  CogMed can only be used in conjunction with a trained doctor's office.  Or a clinical study.

The Army of Women study that I shared in an earlier post used Lumosity.  The exercises specific to working memory (aka the chemobrain problems) were developed by the researchers involved in that study especially for Lumosity.  The exercises were custom tailored for this gang.. us.. yes, that would be you and me, US.  I played around with Lumosity and I like the format and the exercises.

This latest study used a program by Posit Science called Impact.  You can set up an account at BrainHQ to access the program.  And the good news?  The exercises used in the study are available for free.  I've been using them for a couple of days and still haven't gotten to a point where I've been asked to subscribe to anything.  In other words, I don't know how far into the exercises one might go before being asked to subscribe but I will say that the cost appears to be nominal ($10.00 per month).  AND, the introductory period is long enough to determine if you like the exercises, if you will DO the exercises and if you begin to SEE improvement.

Besides the required reading about the study results, I have yet one more NEW article confirming that, "Yes, I Have A Chemobrain," which was, in one of those odd coincidences, published shortly after these study results.  You will find the article here.  Me?  I can't get enough validation.  Why?  It is DAMN frustrating to still have oncologists make statements like, "There's this thing called chemo brain but I don't believe in it."  Yes, that's a direct quote from the article.... and yes.... I'm going to form a posse if anyone cares to join me so I can show him what Dr. Von Ah has learned:

"Recent research has confirmed that chemobrain.... affects anywhere from 20 to 75% of breast cancer survivors who undergo chemotherapy.  Symptoms can last up to ten years.......... Until now, there have been no evidence-based treatment options...."

I'm all about evidence based treatment and science based evidence.  I know symptoms can linger beyond ten years based upon the published results of another recent long term study of patients treated with CMF (cytoxan, methotrexate, fluorouracil).  That 75% number?  While shocking to see it in print, I'm not altogether that surprised.

As for the validity of Posit Science?  In one of those other "serendipitous" moments, I received an email from BrainHQ confirming my membership.  And what else is in the email?  The concerns of NFL players and their cognitive health and how BrainHQ may be helpful for those who've suffered due to football injuries.  Unlocking the mystery of the human brain in any area, in my most unscientific brain, seems like it will spill into other areas.

Stick with me a moment.  You know this will be brought full circle and tied with a crisp bow.  Yesterday, I had plenty to say on my friend, Nancy's blog.  Nice Try, NFL is the title of the post on The Pink Underbelly blog.  It's an excellent piece and I left her a note and I MENTIONED in my note that I'd recently seen interesting commentary.  Someone was questioning how the NFL could be so hell bent on this crucial catch pink shit while simultaneously ignoring their own..... the "lower tier players" who stuggle with all sorts of brain issues and are unsupported by the league.

A little wagering:  I see Nancy's "nice try" and I raise a "good question."  NFL?  You in on this round?

Enter Posit.  And that email.  And what does it say?

"While there are not yet study results showing that BrainHQ training is effective for repeated concussions........ research is underway to measure the extent......BrainHQ can improve outcomes.... with brain injuries."

And the rest of it?  Well.... just like that panel I was on last week for breast cancer, there are other panels where consumers reviewers are at the table.  One of the CDMRP programs is for psychological health and traumatic brain injury. And so.... I am confident in the potential impact BrainHQ might have on our brains.  Posit Science has promised to keep us posted as the results are available.  They were awarded a $2 MILLION grant through that Department of Defense program in FY2010.  I did see the grant and the abstract on the DoD website.  I'd link to the actual grant but I can only link to the search page.  Instead, here is the announcement made by the company when they learned their application for funding would be the recipient of an award.

Let's just say my participation on a review panel gives me a bit of a unique insight into the process this program went through to receive a $2 Million grant.  BrainHQ is the real deal.  I know what it was like to sit in that room and I know how thoroughly these applications are scrutinized from every.single.angle.  I only saw round one.  These folks made it to round two and then, TaDA: funded! This is mighty impressive.  MIGHTY impressive...

I have absolutely no qualms about suggesting, "It can't hurt to try."

AND.... I do expect Idelle weigh in on this.

For now, this is Lou signing off.  Hey ABBBOOTTTTT......


ScienceDaily (Oct. 3, 2012) — A new Indiana University study is the first of its kind to show it may be possible to improve memory and thought process speed among breast cancer survivors.
Diane M. Von Ah, Ph.D., R.N., assistant professor at the IU School of Nursing and a researcher at the Indiana University Melvin and Bren Simon Cancer Center, and colleagues studied two different treatment options for breast cancer survivors because they often report problems with memory or feelings of mental slowness, which can lead to depression, anxiety, fatigue and an overall poorer quality of life. These symptoms can be severe and may persist after cancer treatment ends.
To date, there have been very few treatment options available for patients to deal with these problems. The IU researchers compared no treatment to two different training programs.
The results, recently published in the journal Breast Cancer Research and Treatment, showed that a memory training program improved memory performance, while a program called Insight, developed by Posit Science, improved both memory performance and the ability and speed in which the survivors processed information.
Memory training, for example, involved teaching participants strategies for remembering word lists, sequences and text material.
Insight is a computer program in which study participants followed a series of progressively more difficult information tasks.
"These results are encouraging in that both training programs led to positive improvements for breast cancer survivors. The results suggest that the Insight program may have a greater impact on these women," Dr. Von Ah said. "Even though this was the largest cognitive training study in breast cancer survivors, we need to confirm our findings in a larger study."
The study included 82 breast cancer survivors who reported concerns about their cognitive function, such as poor memory and mental slowness. All of the women had undergone chemotherapy. Each woman completed cognitive assessments prior to, immediately after, and two months after training.
The study was supported by the Robert Wood Johnson Foundation Nurse Faculty Scholar Program, an American Cancer Society Institutional Research Grant, the IU School of Nursing Center for Enhancing Quality of Life in Chronic Illness, and the Mary Margaret Walther Program of the Walther Cancer Institute.
Co-authors included the following IU Simon Cancer Center researchers: Janet S. Carpenter, Ph.D., R.N., and Michael Weaver, Ph.D., R.N., both of the IU School of Nursing; Andrew Saykin, Psy.D., Patrick Monahan, Ph.D., Bryan Schneider, M.D., Fred Unverzagt, Ph.D., and Jingwei Wu, M.S., of the IU School of Medicine; Menggang Yu, Ph.D., of the University of Wisconsin; George Rebok, Ph.D., of Johns Hopkins University; and Karlene Ball, Ph.D., of the University of Alabama at Birmingham.




4 comments:

  1. You called? Well, Costello, I think you're on to something. Before these studies came out, neuropsychologists poo-pooed these brain games equating them to mastering sudoko without learning broader skills (so you only improve at sudoku). It's good to see the science now validating that we can exercise our brains just like we can exercise our bodies. I've tried a number of programs, including Posit Science. Sometimes I feel like my head is going to explode after putting in 45 minutes on a cognitive exercise but no pain, no gain, right?

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    1. I did call... and I called because I knew you tried the Posit programs, too. I was GUARDING your HIPAA rights with my LIFE!!!

      I'm happy that these studies are starting to show some promise.

      Thanks for stepping over as my resident expert!!

      xoxo



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  2. I've known about the Chemobrain for sometime now. Heck, I should be their grownup poster child! We Breast Cancer survivors win the odds lottery here. Not that I'm complaining... After nearly 9 years of living with Stage IV Metastatic Breast Cancer, including 4 years of chemotherapy, here I am, rendered alive, but stoopider. I can completely relate to the ADD thing. Look *shiny*! What was that? This is a great post about how the brain cells emerge from the other side. I do use Lumosity, which I didn't realize was developed in part for chemobrain, and I challenge those aforesaid survivor cells daily with the rigors of my return to school in an effort to reinvent myself, or at least my career. I'm working on a Health Information Management degree with the goal of becoming a Registered Health Information Technologist. That's right. A registered HIT woman. It's fun to say and hopefully, will open a new career path for me. Back to school after 20 years... It was so much easier last time around that block, but hey, I'm ALiVe!!!
    Salud!
    Jp Barnes

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    1. I love this.... A registered HIT woman.... Love it love it... and love seeing NINE years with Stage IV.

      Salud a tu!
      AM

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