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.

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.

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.

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

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.

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.

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.

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.

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.

A Spouse With Brain Fog (From Michelle)

Hi,

My questions are from the perspective of the well spouse or family member: Any tips for caregivers/spouse/family in terms of coping with/confronting/discussing this chemo brain issue with our loved one? Also, are there safety issues for parenting while experiencing fog?

Driving, Spatial Orientation (From JBF)

I just finished your book "Your Brain after Chemo".  It was very good.  Thank you for writing it!

Chemo brain was HARD to deal with.  My observations now that I am 5 months out:

1. Driving:  I should not have been driving.  I never had an accident... but I came close too often.  See the next item for more details.

2. Spatial orientation:
I pride myself on being very aware of my surroundings, and my "place in space".  As an example of the problem:  I was driving to a chemo appointment - had done the trip many times - and was totally confused about which exit to take.  Fortunately my daughter was with me and provided the directions.  Very unnerving.  Needless to say, she drove home!!!

Hodgkin's at 20. Needs Provigil (From Kelly)

I would like to begin this email by conveying my RELIEF at seeing this book on the shelf. Chemobrain ("PCCI") really needs to be brought into the forefront and stuck under the collective nose of the oncology community at large, including the NIH and the FDA.

I suppose I should tell you "my story" first so you can understand the impetus for writing this. I had always been "academically-inclined" and top of my class. I was the valedictorian of my high school. I had won countless honors, awards, and scholarships. I had scored a 790 on the SAT verbal, just 1 question shy of a perfect score. My brain DEFINED me. I went to Villanova and I LOVED it. Every moment of it. My mind was finally being opened and challenged in ways it had never experienced. The world was my oyster. I excelled in languages AND science. I was torn between pursuing the law, medicine, or scientific journalism. I had the opportunity to pursue any one of them.

I Appreciate Your Book (From Lori, Esq.)

I would like to tell you how much I appreciate your book - I bought it yesterday, read it all night, with a highlighter, crying.

My breast cancer was diagnosed on October 12, 2006, so about 2 and 1/2 years ago, at the age of 44. There was no history of breast cancer in our family, I was healthy, an avid exerciser, married with children, and had just recently retired to be home more with the kids, after having been an attorney working in a major film studio, supervising a legal department for about a dozen years. I had a lumpectomy, chemo and radiation. I felt lucky to have been diagnosed at the right time, and I had a great attitude. Mentally, I was fine. Then I started with tamoxifen, and within a month, I had horrible menopause symptoms, including mental "fogginess" and disassociation, forgetfulness, and mental confusion (out of body feelings), as well as the horrible night sweats, bloating, etc. The doctors then decided to remove my tubes and ovaries, and switched me to femera.