7-Year Mesothelioma Cancer Survivor Tells Her Story (and It's Not About Chemo Brain)

I think I've done a pretty good job (if I do say so myself) of restricting my blog specifically to the topic of chemo brain. I'm making an exception though for Heather Von St. James who wants to increase awareness of mesothelioma, the malignant cancer that is linked to inhaling asbestos particles. Her video is lovely and inspiring. I hope you'll watch it. Here is part of her note to me, below.

My name is Heather and I am a 44-year-old survivor of mesothelioma – a very rare cancer that kills most people within 2 years. After intense treatment and recovery, I’m still here 7 years later and cancer free. My journey was a terrifying one and I am hoping to turn my pain into purpose and become someone that other people can look to for guidance, inspiration, and hope in situations like my own. My husband and I recently participated in a short video about my journey with cancer and I contacted you because I really feel that your blog would be an excellent place to share. I’m hoping to use this video and my story as a tool to raise awareness of this horrible cancer that is such a deadly killer (and sadly, 100% preventable), as well as spread a message of hope.

It can be found at www.mesothelioma.com/heather/. 

Heather

Neuropsych Testing Can Confirm Chemo Brain, Say UCLA Researchers

Historically, a frustration among researchers has been that neuropsychological testing is not sensitive enough to confirm a patient’s complaints of memory issues after chemotherapy. Imagine then how patients feel. They may have already submitted to batteries of testing. And that testing may not have matched self-reports of memory loss, or struggles attending to the tasks of everyday life, or issues with word retrieval.

Brain scans, on the other hand, can successfully detect cognitive impairment after treatment. My co-author, Dan Silverman, and his UCLA team, were among the first scientists to use PET scans to link impaired brain function with chemotherapy and hormonal therapies. Those results were published back in 2006. Other researchers have noted changes in brain structure after chemotherapy through studies with MRI.

But not everyone has access to a brain scan or cares to submit to one. A sit-down interview with a neuropsychologist and a fill-in-the-dots paper-and-pencil test is far more palatable to many patients.

In this current UCLA study, published this week in the Journal of the National Cancer Institute, researchers investigated whether neuropsychological testing would validate a patient’s report of problems with thinking and memory in a consistent way. Patti Ganz, MD, headed the study and Dan Silverman is a co-author.

To answer the question, the team enrolled 189 newly diagnosed breast cancer patients (stages 0, 1, 2, or 3A) in the study. Timing was important. As other research has shown a link between anti-estrogen drugs (tamoxifen, aromatase inhibitors) and memory deficits, Ganz and colleagues wanted to make sure the women had completed primary cancer treatment but had not yet begun endocrine or hormonal therapy. Women with serious anxiety and depression were excluded from the study as these symptoms also can cloud memory.

Participants completed a questionnaire asking about their cognitive symptoms and went through a battery of neuropsychological tests. When compared, the researchers found a direct correlation between a high level of patient complaints and low test scores. Regarding memory, 23% of patients had higher complaints than those in a control group and 19% reported higher complaints about executive functioning (problem solving, reasoning, etc.). Researchers also found a correlation between low test scores, combined chemotherapy and radiation treatments, and symptoms of depression.

This study is by no means the first to find a scientific basis for a patient’s cognitive complaints. In fact, the literature on this dates back to the 1990s. Other scientists as well have looked at patient self-reports and whether those reports mesh with quantifiable chemo brain. The UCLA study builds on that work.

According to Dr. Ganz, “In the past, many researchers said that we can’t rely on patients’ self-reported complaints or that they are just depressed because previous studies could not find this association between neuropsychological testing and cognitive complaints. In this study, we were able to look at specific components of the cognitive complaints and found they were associated with relevant neuropsychological function test abnormalities."

In other words, the UCLA study further refines the literature backing us up as patients, confirming that as a group, we are not imagining our symptoms. And that’s a good thing, but at some point we need to stop proving the obvious. This phenomenon we call, “chemo brain,” is already known and accepted by the scientific community.

As Christina A. Meyers, Ph.D., Chief of Neuropsychology (retired) at M.D. Anderson Cancer Center says in her accompanying editorial, it’s time to move forward. Let's get to the interventions.

Chemo Brain: A Guide for Caregivers

Sara Barton wrote this beautiful piece for her blog, "The Practical Caregiver -- Cancer." She has graciously allowed me to re-post it here. Not only does Sara write about her experiences as a caregiver but she provides tips and guides for others. See her blog at http://www.practicalcaregiver.org. -- ID

By Sara M. Barton

Guest Blogger

Getting Past Chemo Brain
I'm a big believer that family caregivers can make a difference for cancer patients when we focus on overcoming the dreaded "chemo brain" by helping our loved ones in gentle, respectful ways.

How to Use This Blog

By

Idelle Davidson

Welcome. I hope you'll find the articles and stories here valuable. To begin, browse the LABELS index (right column, bottom of page) and check out reader favorites such as:

1) How Chemotherapy Changes the Way You Think

There you'll find my four-part series on how treatment affects your mind, including an introduction and a discussion of issues with executive functioning (planning ahead, multitasking, solving problems, etc.), information processing and word retrieval.

Navigating Through 'Chemo Brain'*

By

Idelle Davidson

Does any of this sound familiar? You’re halfway through what will be six rounds of chemotherapy when you notice a dense fog rolling over your brain. You grow forgetful. The responsibility of making even small decisions overwhelms you. You find multitasking impossible; good luck completing any task at all. Driving shatters your nerves; you’re disoriented, no longer sure which direction is home.

Second-Hand Smoke and Memory Loss

In my July 5th column (Is Nicotine Good for Chemo Brain?), I wrote about the nicotine patch. Studies suggest the patch may help with memory loss.

Is Nicotine Good for Chemo Brain?

An interesting study but please don't start smoking...

In a study published in the January 10, 2012 issue of Neurology, lead author Paul Newhouse, MD at Vanderbilt University Medical Center, and colleagues, found that nicotine patches may help with mild memory loss.

UCLA Cognitive Rehabilitation Study Needs Participants

I've been asked to post information about UCLA's cognitive rehabilitation study for anyone in the Los Angeles area who might like to participate.

ASCO, WHERE HAVE YOU BEEN?

The organization that sets standards for cancer care does not include cognitive issues in their patient consent document 

Last Thursday I was in Arlington, VA at the National Cancer Institute’s 6th Biennial Cancer Survivorship Research Conference. I had been asked to speak about cancer and cognition. Specifically, the organizers wanted me to comment on the “disconnect” between the research/medical community and the patient experience.