Making the Cognitive Leap: Exercise is Good for 'Chemo Brain'

By Arash Asher, MD

Director, Cancer Survivorship and Rehabilitation

Samuel Oschin Comprehensive Cancer Institute

Cedars-Sinai Medical Center, Los Angeles, CA

Fortunately, the scientific community has come a long way over the last several years in better understanding chemo brain, its causes, and how it can really impact a cancer survivor's life.  Unfortunately, we have much more work to do in learning about effective treatments for this problem.  

New Book From Breast Cancer Sisterhood

I'd like to recommend a sweet new book, "Breast Cancer Sisterhood: A Guide to Practical Information and Answers to Your Most Intimate Questions" by Brenda Ray Coffee with co-author Barbra Swanson. 

Her Employer Let Her Go After Cognitive Problems at Work

By Karen B.

Madison, WI

Guest Blogger

I am 59 years young.  I was diagnosed in July 2008 with stage 3A breast cancer.  I had a lumpectomy followed by a mastectomy because my margins were not clean, had chemo Adriamycin, Cytoxan and Taxol, followed by six weeks of radiation treatment.  I've been on the anti-hormonal drug Arimidex since May 2009.

After Chemotherapy for Breast Cancer, My World is Flat, Colorless

By Lisa Iovino-Lewis

Los Angeles County, CA
Guest Blogger

Although I seem vibrant, my entire life has changed because of chemo brain.  Three years ago, just before my 47th birthday, I was diagnosed with stage 3B ductal breast cancer. While going through 6 rounds of TAC (taxotere, adriamycin and cyclophosphamide) protocol, my brain took a journey I was not expecting.

Hodgkin's Lymphoma Survivor Says He is Wealthy Because of 'Chemo Brain' -- Think Pinball Wizard

By Patrick Harvill
Southern California
Guest Blogger

Hi Idelle,

I'm 9 1/2 years out from treatment for Hodgkin's lymphoma and I have chemo brain in spades.  My symptoms are mostly the usual -- short-term memory deficits, attention deficits meaning forgetting what I am talking about or doing, and the whole intending to do the action but it doesn't happen.  I have near-amnesia under stress.  Related chemo maladies are chronic fatigue and fibromyalgia. I can't recall them all. Those are the main ones that bedevil me.

Have Chemo Brain? Tell Your Story Like a Caveman (or Cave Woman)

By

Idelle Davidson

For those of us who have traveled through cancer or are experiencing it now, how does sharing our stories help us find our way? The answer lies in validating each other's thoughts and feelings so that no one feels isolated and alone. The answer lies in connection, in community.

Testing for "Chemo Brain" as a Disability

[You may have seen my recent interview with Joanna Morales of the Cancer Legal Resource Center.  Joanna very kindly answered my questions about workplace protections for people with "chemo brain" and she did a fabulous job (See October 4, 2010).

In this week's post, prominent clinical psychologist Robert Ferguson, PhD, discusses how difficult it has been for scientists in general to define cognitive "disability."  He zooms in a bit on one of his case studies.

Cognitive Changes After Treatment

In this video, the director of the Lance Armstrong Foundation Adult Survivorship Program at Dana-Farber Cancer Institute interviews psychologist Mary-Ellen Meadows about "chemo brain." Dr. Meadows also works at Dana-Farber. You'll find some basic but good information here, much of it covered in Your Brain After Chemo.

A Misleading Headline About Chemo Brain?

Okay, maybe it's just me but a headline from last week's story in the New York Times about "chemo brain," left me baffled and concerned enough about accuracy that I posted a comment stating as much on the New York Times Well blog.

A Book for Young Adults With Cancer

I just finished reading a book that I'd like to recommend called, "Everything Changes: The Insider's Guide to Cancer in Your 20s and 30s" by Kairol Rosenthal.

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

Stand Up 2 Cancer AND "Chemo Brain"

From

Marcia Cohee

Saw the Stand Up 2 Cancer program last week, and just bawled, terrified. It broke down all those little defenses that say "Oh, cancer wasn't so bad." It was. And is. Chemotherapy has taken my concentration, my ability to write and my energy to crawl to poetry readings. The greatest tragedy is not that I am sick, but that I am one of millions of cancer "survivors" who are now sick and disabled.

Marcia Cohee is the author of four collections of poems which she wrote prior to experiencing"chemo brain."  Her collection, "Story," is available through Amazon and her publisher.  She will be reading at the Ugly Mug Cafe in Orange, CA on November 3, 2010.

What was your reaction to Stand Up 2 Cancer's telethon? Click on the COMMENTS box below and let us know.

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.

A Note From Bobbi

You saved my life a few years back after listening to your and Dr Silverman's webcast talking about chemo brain.  My oncologist saved my physical life but you saved my emotional life.

A Breast Cancer Survivor Asks: Will My Mind Return to Normal? [From Susan]

Hi,
I was diagnosed with breast cancer over seven years ago and underwent a lumpectomy, chemo and radiation.  Immediately after my first chemo, I experienced severe difficulties remembering things and felt like I was definitely  not on top of my game.  I was immediately placed on disability for my "cognitive deficit"  because I was unable to perform my job as a medical sales representative. I have been seen by many specialists, including a neurologist, neuropsychologist and even had brain scans. I have gone to physical, occupational and cognitive therapy.  Basically, I have suffered loss of a job, a financially secure retirement, loss of respect from family and friends because they have no idea what has happened to me.  And although I have tried to advocate for gaining back some brain cells...I have become very discouraged. Will I ever get better?? -- Susan

----------------------------------------------------------------------------

 A RESPONSE FROM 

DR. ROB FERGUSON

 Hello Susan,

You are certainly not alone.  In general, it is believed about 40% of people who have had chemotherapy can have mild to moderate dysfunction with memory and/or attention, well beyond the time of last chemotherapy.   Evidence from research suggests these problems do not get progressively worse, such as might be expected with forms of dementia or Alzheimer's Disease.  However, some research suggests these problems are long lasting over years.

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.

INFORMATION PROCESSING: How Chemotherapy Changes the Way You Think, Part 3

by

Idelle Davidson

In the introduction of Your Brain After Chemo, I tell the story of one of my friends, "Linda," who was in a support group with me at the Wellness Community.  Earlier in the week she had tried to get to the market only to find herself tangled in frustration.
  

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.  

Her Brain After Treatment for Hepatitis C [From D.M.]

I read your book, "Your Brain After Chemo," and I would like to share a few comments from my personal experience.

I have chemo brain from a slightly different direction than most people. In 2001 I was a healthy, active, high-functioning 47-year old businesswoman who underwent PEG-intron combo (Peginterferon alfa-2b) treatment for Hepatitis C. The treatment is monitored by a gastroenterologist for a period of 6 months. I was told I would feel a little tired, and have "flu-like" symptoms. I ended up staying in bed for the full 6 months, unable to drive, work, and barely able to feed myself.

When I inquired about this, my doctor said, "Just stick with the program, that's the most important thing." I was never informed that my adverse effects could or would continue after treatment.

At the end of my 6 months, I embarked on a rigorous program to regain my health and fitness. I exercised as much as I could, swam, saunas, colon cleaning, craniosacral massage; anything to help my body get going again.

In addition, I saw my G.P, gastroenterologist, neurologist, psychologist, physical therapist, and psychiatrist, constantly looking for the answers to why I could not regain my health. There were probably a few more doctors I saw that I can't remember.

My problems included: extreme fatigue so severe that I often could not finish breakfast without needing to go back to bed, inability to read for more than 5 minutes without getting an ice-pick headache immediately, feeling like I have the flu everyday, severe ringing in my ears, mental confusion, cognitive dysfunction, depression, suicidal ideation, joint pain, muscle aches, on and on.

Finally, I saw a hepatologist in San Francisco who had worked in the clinical trials for the drug I had taken, Peg-intron. When we met and I explained my problems, he shrugged and said, "Yes, we know about all those effects and they are probably permanent brain damage."

Stunned, I asked, "What am I supposed to do with the rest of my life? I can't go back to work. I can't even drive."
He looked up from his papers and said, "Get on disability. And for your brain damage, take up basket weaving."

Thus dismissed, I left his office and wept. Finally, I had learned the truth, but the truth was that my life was over as I once knew it.
For the last 9 years, I have tried so many things including many of the medications your book suggests. Sometimes I'm a little better, but then I inevitably crash and have to start the process all over again.

Unfortunately, I have many friends who underwent the same treatment with even more disastrous results. Some are in wheelchairs, care homes, and many have committed suicide. For some reason, I'm still here.

I am glad to find out that there are researchers studying the "continuing adverse effects." Hopefully, the research will be able to refine the drugs so that they do not cause the terrible -- I can't call them side effects -- the truly terrible effects these drugs can cause.

Thank you for your book.

D. M.

Speaking to a Crowd of 300 on National Cancer Survivors Day

by

Idelle Davidson

That's me giving the main address of the evening and the first time I had appeared before such a large group, either with or without my co-author.  What a nice experience.  Those in the audience not only stayed awake during my talk on "chemo brain," but laughed in all the right places! Thanks Paula Bauer and Torrance Memorial Medical Center for inviting me!

From Gudrun Durmon: Every Pink Warrior Needs a "Chemo Sabe"

Hi Idelle,

Of course you don't know me , but I am a member of the very same club we did not want to belong to (I am OK with it now) and I did have a raging case of chemo-brain.
 

It was so bad that I knew if I did not get better I would not want to "survive."  I read your intro pages of your story in your book,  after the title completely grabbed my attention.  I have said more times than I can count that chemo fog must be how a person with Alzheimers feels....that you would use almost the exact words definitely hit home.

New Research from MD Anderson: Delayed Onset of "Chemo Brain" Months After End of Treatment*

By

Idelle Davidson

In some disturbing findings reported in the April 28, 2010 issue of the journal Cancer, patients may not experience "chemo brain" during treatment but rather months later.  According to the authors, "This is very concerning as clinical lore has suggested that treatment-related cognitive dysfunction should dissipate over time."

Meet us at the L.A. Times Festival of Books, April 24 & 25

My co-author and I will be speaking about "chemo brain" and signing copies of our book at the L.A. Times Festival of Books at UCLA on Saturday April 24th and Sunday April 25th.  You'll find us on the Health and Wellness Stage at 4 p.m., both days.

If you're planning on attending the festival that weekend, please come by. Would love to meet you!

Idelle Davidson and Dan Silverman Interviewed on Voice America - Link to It Here

Last week we were guests on "Frankly Speaking About Cancer," a program on Voice America internet radio.  Cancer Support Community president and CEO Kim Thiboldeau asked some great questions about the symptoms and causes of chemo brain, and why so many oncologists fail to mention to patients that chemo brain is a very real side effect of chemotherapy.  To hear what we had to say, click on this link. I'd appreciate hearing your comments about the program, either here or via email.

Registration Open for Healing Odyssey Weekend Retreat (April 9-11)

If you've had cancer and are still dealing with the trauma of your diagnosis, then I would like to recommend a wonderful organization called Healing Odyssey.

The organization holds therapeutic weekend programs for women cancer survivors and is now taking applications for their spring retreat.

I participated in 2006 just after my own diagnosis

Keeping Your Mind and Hands Active [From CLL Survivor Bruce Lantry, Rural Nebraska]

Chemo Brain was one of the most noticeable side effects of chemo for me, and one that was not even mentioned while I was going through treatment. It would have greatly benefited me to know about the problem earlier since it would have saved me some concern about the mental problems I was experiencing.

Send Me Your Info about "Chemo Brain" Rehab Programs, Studies and Trials

by
Idelle Davidson

My article about the advances in "chemo brain" research is in the Huffington Post.  Feel free to read and comment. 

Researchers at the University of Rochester are doing good work, as are scientists at medical centers around the world.  If you're one of them, or if you follow the research as someone involved or interested in the cancer community, I would be delighted to post your information here or on the Huffington Post about ongoing studies, clinical trials, rehabilitative programs, etc., dealing with cancer treatment-related cognitive impairment.  Email me to help others stay informed.

Breast cancer at 38 with Fog & Depression [From Susan M., Kansas City, MO]

Your book was amazing and long overdue. For me it was like a huge sigh of relief.

Your story spoke to me and I couldn't put the book down. I am also a strong girl, went to all my tests, diagnosis and treatments alone. I initially didn't tell my family, gave my doctors my cell phone number, and demanded an appointment for my test results so my doctor could officially diagnose me face to face. I did not want to live the rest of my life remembering where I was when I took my cancer diagnosis via a cold phone call.

Stanford Imaging Study & Brain Abnormalities in Chemo Patients

In another study using functional magnetic resonance imaging (fMRI), Stanford researchers linked verbal memory impairments with the CMF (cyclophosphamide, methotrexate, and 5-fluorouracil) regimen of chemotherapy. The number of participants was quite small though, involving just 14 women with metastatic or locally advanced breast cancer who had gone through chemotherapy, and 14 healthy women who served as controls.

Shelli Kesler, PhD, assistant professor of psychiatry and behavioral sciences, led the study which was published in the Nov. 1, 2009 issue of Clinical Cancer Research.

For more information, click here.

A Fog That's Relentless (From Ann Gregory)

Reposted with permission. See "Ann's Fight: Documenting Ann Gregory's fight with Acute Lymphoblastic Leukemia, at http://anngregory.blogspot.com/. 

When I last saw my post-transplant nurse, Karen, for a biannual followup, she took me through the paces and mentioned a new program being developed in conjunction with the neuropsychology brain trust at MD Anderson. I filed the information away, thinking that I probably wouldn't need to take advantage of it since I was coping with my chemo brain just fine.

Research Rock Stars at University of Rochester (bet you can't say that five times really, really fast...)

by
Idelle Davidson

I have no connection to the University of Rochester in New York other than I interviewed one of their scientists while researching and writing Your Brain After Chemo.  Perhaps if I did, I wouldn't sound like some gushing M.C. But here goes: Boys and girls, brothers and sisters, give it up for the University of Rochester!!