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.
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.
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.
By Patrick Harvill
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.
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.
[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.
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.
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.
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.
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.
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
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.
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.
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
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.
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.
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.
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/
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...
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,
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.
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 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.
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.
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.
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.
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.
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!
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.
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."
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!
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.
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.
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.
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.
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.
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.
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!!