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 Stress Affects Memory

We know from several studies now that some patients show cognitive decline just prior to cancer treatment.

Michael Sieverts' Tips/Tricks to Recover Your Life

My friend, Michael Sieverts, is a 10-year brain cancer survivor, a highly respected patient advocate, and a qi gong instructor for the Cancer Support Community. He is exceptionally well-read on the topics of brain health and cancer-related cognitive decline. ID

Michael Sieverts

By Michael Sieverts

This is a handout for the “Chemobrain” panel I moderated on February 21st at the Cancer Support Community-Benjamin Center. From my introduction that evening:

This is an incredibly important moment in the history of cancer treatment, and we appear to be at an inflection point in terms of understanding the multitude of diseases we refer to collectively as cancer. A good deal of the excitement has to do with scientific

Another Resource: An E-Book on Chemotherapy

My friend and colleague, David Drum, sent me this note about his book and I am happy to post it here. -- ID

Learning Ukulele Has Helped My Memory

By Lori Nakamura
Aiea, Hawaii

I was 39 years old when I was diagnosed with triple negative breast cancer. I went through 5 cycles of chemo, and still today endure the lingering effects of chemo brain.

Fortunately, I have a friend who told me about the Hands On Healing program. She explained that Roy Sakuma Ukulele Studios offers free lessons to cancer survivors. Adding to the joy of learning to play the ukulele, my two daughters were able to sign up for lessons as well. Next month makes two years since we've taken up ukulele, and it will be 5 years since my surgery and treatments.

A Guide to the New Health Care Reform Law From the Author of a Guide to Cancer

By Kairol Rosenthal

Guest Blogger

Brain fog is hard enough without the dizzying language of health insurance red tape.  But, it's well worth cutting through the haze to understand these new benefits.

Chemotherapy Alters Brain Tissue in Breast Cancer Patients, Say Indiana University Researchers

Dear Readers, 

Before you read the press release below, I'd like you to know that the concept of using brain scans to connect the dots between chemotherapy and cognitive dysfunction is not new.  

What is new is that this study was "prospective," meaning "over time."  Whereas in other studies the participants had already been through some amount of chemotherapy or had completed treatment years prior, Dr. Saykin and his team did a "before" and "after." They scanned patients prior to undergoing chemo or radiation and then at two points after going through chemo. So they had some good data comparing the changes in brain tissue.

5 Ways to Self-Empower Even the Foggiest Recovery

By Michele Rosenthal

Guest Blogger

The most difficult part of being sick - and recovering afterward - is the cognitive impairment we experience during that time. Whether due to drugs, medications, stress or just plain exhaustion it can be so difficult to keep our heads clear, our minds exact, and our thoughts congruent. After fifteen years of being a chronic, sleep-deprived, malnourished and overly stressed patient with PTSD (Post-Traumatic Stress Disorder), however, I discovered that there are definitely some self-empowered ways to gain control during that fuzzy-brained period.

Hypogonadism (Decreased Hormones) in Male Lymphoma Patients After Chemo

From "J"

One lymphoma-related male issue is that of hypogonadism, where the testes produce decreased or no hormones.

In a paper in the British Journal of Cancer (2009), a group in Norway found (I'm trusting my memory here so be warned the details may not be exact but the principle is) that about 40% of men over 50 treated for lymphoma were hypogonadal. This can be a late side-effect. They compared patients with and without radiation.

I had been having hot flashes and fatigue and thought my thyroid was messed up. My primary care physician is an endocrinologist and correctly identified the problem. Testosterone levels were running on fumes. Admittedly the seminal article (pun intended) from Norway which had large numbers had just been published. I hope oncologists are checking testosterone levels in men post chemo for non-Hodgkin's lymphoma and Hodgkin's lymphoma. If you are only borderline low you'll have to fight with your insurance company but citing the BJC article may help. -- "J", non-Hodgkin's lymphoma

_______________

A Response From

Dr. Dan Silverman

Thanks for shining a light on the problem of endocrine hypogonadism that is, unfortunately, not uncommon among men who have been treated for lymphoma.
As you have indicated, men who are over 50 years old are especially vulnerable to it, suffering from this condition about five times more

How Do You Learn?

By

Idelle Davidson

I have always been interested in how the brain works, not just in adults but in kids too.  So some years back when a national magazine asked me to write a piece on the best ways for children to learn, I couldn't wait to dig in and interview the experts.

Word Retrieval: How Chemotherapy Changes the Way You Think, Part 4

By

Idelle Davidson

It's right there on the tip of your tongue.  It's a word that has a "ka" sound in the beginning and a "tah" sound somewhere at the end.  And you can almost see it, but then darn, it's gone.  Perhaps later, when you're rushing to slap dinner on the table, that stupid word, so maddeningly elusive just hours before will pop right into your head, as if it were all just a silly misunderstanding between you and your brain.

Hear My Interview on Empower Radio

by

Idelle Davidson

You can download my interview with Mel Majoros of Empower Radio, here.  I've been interviewed several times about Your Brain After Chemo, but this was probably the most fun conversation of all.  Mel has a great sense of humor and she is a very warm and inviting radio host.

Check out Mel's blog as well at http://www.thecancerwarrior.blogspot.com/

EXECUTIVE FUNCTIONING: How Chemotherapy Changes the Way You Think, Part 2

by

Idelle Davidson

Many people who have been through chemotherapy report problems with EXECUTIVE FUNCTIONING.  Of course they don't call it that, they just say their brains have turned to sludge.

Executive functioning is high-level thought found in a part of the brain called the frontal cortex (just behind the forehead).

INTRODUCTION: How Chemotherapy Changes the Way You Think, Part 1

by

Idelle Davidson

Have you heard of "cognitive domains?" That's a term mental health experts use to explain which areas of the brain do what. People who have gone through chemotherapy often take a hit in these areas.  Look at the domain categories below. Do any describe what you may be calling chemo brain or post-chemo brain or brain fog?  What you may be suffering is actually a deficit in your executive functioning.  A mouthful, I know.  Okay, let's go back to chemo brain...

After Chemo, Changes in Personality and Mood [From Ellen K.]

Dear Dr. Silverman and Ms. Davidson,

I just read with great enthusiasm your book which I hope is the first step toward an understanding of "Chemo Brain."  I am nearly 5-years out from surviving surgery/dose-dense ACT (Adriamycin, Cytoxan and Taxol) chemo/radiation for stage 3 breast cancer.  I was 39 at diagnosis,

Questions About Memory Loss From a Hodgkin's Lymphoma Patient

My story is a brief one, but I sense a need to spell out what is not told to patients by many oncologists.

I was diagnosed with Hodgkin's lymphoma a little over a year ago after I had experienced symptoms about 18 months ago with primarily weight loss.  I was in great physical shape and doing  a lot of hiking.

The treatments of ABVD (Adriamycin, Bleomycin, Vinblastine, and Dacarbazine) began in August 2009, and it was shortly after that my brain began changing.  I had a history of retaining names, ideas, concepts, book titles and past experiences, but began to forget many things I once experienced.  By the time I finished my chemotherapy sessions in February 2010, I was definitely different because of what I had forgotten, and what I consistently knew before and could no longer remember.

Your Brain After Chemo is absolutely a vital resource in providing ideas for recovering some of my memory that has simply disappeared, as if I had entered a twilight zone during chemo sessions. My memory was so affected by chemotherapy drugs, that even though much long-term memory is still there, many memories of names of people whom I met and titles of books I have read during the past few years suddenly were forgotten.  My brain could simply not retrieve them when I got into conversations with friends and wanted to speak of a person or a book, even though I remembered some content and experiences. 

I am retrieving short-term memory slowly and with practice and re-reading, but I always wonder: What is considered normal memory loss after certain specific chemotherapies?  

Second question might be: Why is it that many patients are not told of this potential memory loss BEFORE they enter chemotherapy?  Why is it not normal protocol for oncologists to mention cognitive and brain functions are affected?

I still do much physical activity, I once even hiked 4 miles in between chemo treatments, but my normal astute brain functions seem to recover slowly at times, and some times rapidly, depending on the day, on sleep patterns, on reading habits, on memory exercises and on dietary intake.

Thank you for writing the book and for this opportunity to share an experience on the mental side effect of my Chemotherapy.

Lorenzo C

____________________________________

A RESPONSE FROM

DR. DAN SILVERMAN

Thanks for sharing your experience, Lorenzo, as well as for your feedback on Your Brain After Chemo.   

Regarding your questions, first, there really is no "normal memory loss" which we can cite... the experiences of patients even with a given

Physical Exercise Helps With Chemo Brain

by 

Idelle Davidson

Physical exercise is hugely important in recovering all those marbles we somehow lose during cancer treatment. Exercise increases blood flow (and oxygen) to the brain. In laboratory studies, animals that exercise regularly create new neurons in the hippocampus. That region of the brain is key to forming memories.

A Moment of Intense Disability...A Connection to Alzheimer's? [From Lois]

Last Friday night I attended a local showing of 2 films, one about mental illness and one about breast cancer. I had been looking forward to speaking with a person involved in the making of those films, and I was taken aback when I spoke with her because that brief opportunity turned into a chemo brain experience. I could barely function, and I was trying as hard as I could. She is an exceptionally sensitive and intelligent woman and recognized that I was having trouble and did her best to make the moment comfortable for me and accept me.

Vsion Went Black After Chemo -- Just for a Few Minutes [From Lois]

When I was diagnosed in 2002 I did not understand why no one seemed interested in determining what effect chemotherapy might have on the brain and the nervous system. When I asked my onc, his response was that in his decades of experience with it, "only a few had been totally disabled" by it. This is a guy who is beloved by physicians and patients alike.

Colorectal Cancer Survivor in N. Carolina Needs a Doctor's Help. Any Suggestions? [From Connie]

Thank you for writing a book about chemo brain.  Since my treatment for stage 3 colorectal cancer, my mind has not returned to normal.  I was 33 when diagnosed... active, fertile, mother of three.  A month after starting Xeloda and radiation, complete menopause set in.  Until then I had managed quite well with the stress of my mother's cancer and death, and becoming my disabled father's primary caregiver, as well as my own diagnosis.