Your Brain After Chemo

Chemo Brain Program, Feb. 21, W. Los Angeles, 7-9 pm

2012-02-06T15:03:00.000-08:00

I'll be on the panel with Arash Asher, MD and Mi-Yeoung Jo, PsyD, ABPP, both from Cedars-Sinai, along with Karen Saywitz, PhD, UCLA professor of Health Sciences, and Michael Sieverts, CSC instructor and moderator. Hope to see you there!

RSVP to the Cancer Support Community
1990 S. Bundy Dr., Ste. 100, Los Angeles 90025
310-314-2555

Click on the flyer to enlarge.

How to Use This Blog

2012-01-27T06:06:00.000-08:00

Idelle Davidson

Welcome. I hope you'll find the articles and stories here valuable. To begin, browse the LABELS index 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.

2) Research

You may be surprised to learn that scientists are finally beginning to connect the dots between chemotherapy and cognitive dysfunction. Read about advances at the University of Rochester, M.D. Anderson Cancer Center, Indiana University and other institutions.

3) Ask the Experts

Doctors and others answer readers' questions about brain fog.

4) New York Times Consults Blog With Dr. Silverman

Dan Silverman responded to readers' questions in the New York Times about "chemo brain.' Read a sampling of the questions and answers here or click on the link to the actual New York Times blog.

5) Is "Chemo Brain" A Disability Under the Americans With Disabilities Act?

Read my Q & A with attorney Joanna Morales of the Cancer Legal Resource Center and learn how you can protect yourself in the workplace.

6) Stories

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. The answer lies in connection, in community.

My favorite story submitted by a reader is from Lori. Find it in the LABELS index under "I Appreciate Your Book." The first line of her note to us is what made the two years it took to write our book all worth it. She begins: "I would like to tell you how much I appreciate your book - I bought it yesterday, read it all night, with a highlighter, crying...."

If you read all twenty stories, you'll come away with a pretty good idea of the toll "chemo brain" takes on cancer survivors and their families. Michelle writes about trying to be loving and patient with her husband who went through chemo for Hodgkin's and is now chronically forgetful. Susan M. tells us about her breast cancer diagnosis at age 38 and how she is still dealing with fog and depression. Lois wonders if she has Alzheimer's. Bruce Lantry was treated for leukemia. He has found ways to cope with his loss of mental focus.

Yet, these really are so much more than stories. These are messages. They are here, on this blog, from men and women of all ages and all cancer types. They are here to confirm that each of us matters.

Also, make use of the SEARCH BOX at the top right of the page. Put in keywords like lymphoma or breast cancer or memory or multitasking or driving, or word retrieval, or exercise, and see what articles and resources come up.

And finally, to really learn about "chemo brain," to understand what causes it and what you can do about it, get a copy of our book: "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus" by Dan Silverman, MD, PhD and Idelle Davidson. See the reviews on Amazon.

What’s Another Name for Chemo Brain?

2012-01-23T19:18:00.000-08:00

We follow the New York Times style guidelines and spell it as two words: chemo brain. I’ve also seen it as one word: chemobrain, or chemo-brain. Others call it, “chemonesia,” or “cancer brain fog.”
If I were to call it something else, I’d just say, “fog” or “cancer fog.” I don’t think you need to say, “brain." Why be redundant?

In fact, “chemo brain,” doesn’t always mean you've had chemo. I know thyroid cancer and breast cancer patients who've had surgery and radiation only and they still report feeling like a planet of haze has taken over their brains.

And therein lies what’s so fascinating by this “chemo brain” concept. Studies have consistently shown that about one-third of patients experience some amount of memory and other cognitive impairments even before they go through any kind of treatment, including chemotherapy. Researchers believe that having cancer itself may contribute to the fog as the body fights the disease and is under stress from inflammatory molecules.

It’s also hard for scientists to tease out other contributors, like radiation, anesthesia from surgery, steroids, pain killers, and hormonal therapies.

Adding to the mystery of what’s going on, once these patients then begin chemotherapy, their memory problems get worse before they get better.

That’s why experts who study the field of cancer and cognition avoid the term, “chemo brain,” and call it "cancer or cancer-treatment related cognitive impairment."

That mouthful may be more precise, but "chemo brain" has become shorthand for the fog so many of us have experienced. I'm happy to leave it at that.

SOMETIMES ALL YOU CAN DO IS LAUGH

2012-01-11T00:01:00.000-08:00

Have you ever been on Mr. Toad’s Wild Ride at Disneyland? If so, then you may have an inkling of what goes on inside the head of my wonderful guest blogger, AnneMarie Ciccarella.
Her story below and the posts she writes on her own blog, are a fast-moving, completely candid, hilarious, stream of consciousness that pull you right into the daily spins and turns of living with chemo brain. And now, HOLD ON TIGHT. Here’s AnneMarie. -- ID
AnneMarie Ciccarella blogs about her adventures at www.chemo-brain.blogspot.com and can be found on twitter @chemobrainfog. She is still fine-tuning her direction and until that has been established, her bio simply reads, “Cancer rebel, irreverent blogger, wisecracking dim-twit.”

AnneMarie Ciccarella

Guest Blogger

When I started to learn about all of this chemo brain stuff, I began to hear certain catch phrases. One of my favorites? “Work-around solution.” A work-around solution is a way out of a jam that wasn’t the intended way, may not provide the exact results you wanted, but it is sufficient. Or, more accurately, you either let it be sufficient, or you continue on the path of I AM DETERMINED TO GET THIS EXACTLY THE WAY I WANTED.

Well, guess what? There is one choice and only one choice: just go with it already. Uphill battle and your brain is not giving in. Laugh. I’ve learned that my rigid and structured ways just have no place in AD time. (Footnote: AD is my way of referring to the period after active treatment. I decided to adapt the BC:AD calendar to refer to the way cancer has divided my life. If anyone would like to toss out suggestions, I am still playing with what those letters mean…“Another Distraction”…“A(new) Direction”… nothing has really grabbed me yet….. )

BRAIN: Come back…. Now, for those who never stood at a bar trying to remember that you like tonic with vodka, allow me to elaborate. You know when you are talking and you hit a brick wall. How many times have you stood in frustration saying aloud, “It’s on the tip of my tongue.” And then, whether it was a word or a movie or the name of a person, you know it’s going to drive you crazy until it comes to you. Sometimes, it will pop into your head.

You may begin to do some free association: “You know the movie, it starred Robert DeNiro and he was the father with the little kid who grows up… the kid, you know, the kid who was arrested a few years back in real life… oh, this is gonna drive me crazy, it’s on the tip of my tongue!”

If you are lucky, that will have been enough to either bring the title into your head or, if you happen to be talking to one of my kids, they will provide the title in a split second. Sometimes, it’s something that you may not figure out and it WILL drive you crazy. Back in the day, the choices were:

• Stop thinking about it and it will come to you (may or may NOT actually happen)

• Give up and have it pop into your head at the most random moment.

Today, there is an option “C,” which is my personal favorite: The Internet Scavenger Hunt. Let me see how many combinations of words I have to Google before I have the information. I’ve come to accept this OCD component that seems to be part of my particular case of chemo brain so I will always go with Option C. Maybe you do, too.

Or maybe one of my kids already helped out so this particular “tip of the tongue” episode passed without really being an episode at all. Or, if you were not quite that fortunate, you might be driving along, sometimes DAYS later and just blurt out the word or title. (Or, you may actually forget the whole conversation and have to apologize to someone for insisting they were crazy, just thought I’d throw that out there….) We’ve all done it. I know you can relate. I can SEE you nodding your heads.

That is the “it’s-on-the-tip-of-my-tongue dilemma” which is different from word dropping and if you don’t belong to the club, and I hope you never do, word dropping is exclusive to those who reside either in the fog of active treatment or are already in the AD portion of the journey. And, to clarify further, word dropping isn’t a distant relative of name dropping, and btw, I don’t like those people, the name droppers, I mean.

Word dropping is when the normal everyday word is right there, yes, on the tip of my tongue. I’ll fight for it to catch the train that will transport it from my brain to my tongue. Ok, take a breath. Not today? Time to implement my new skill and most importantly, to laugh at myself in the process.

What occurs next -- and this is in no particular order – I will either define the word or find a less suitable word. If I define the word, this could come off somewhat smart-assy if my definition sounds identical to the entry one might find in Merriam-Webster’s New Collegiate Dictionary (and yes, for the record, there is a copy on my desk, circa 1980). Sometimes, just like the old cliché about books and movies, the book IS better (than the internet). I may attempt to explain the word, a dangerous venture which holds a high degree of probability and I will be completely off topic within the first minute as I have now ventured into the world of What The Hell Was I Saying?

Alternatively, I will find a less suitable word which always pisses me off because for whatever reason, I DO know the substitute word is missing some small subtle something. (Gee, wonder if subtle and substitute have some connected root word prefix thing going on… going to check on that RIGHT NOW). Having CB OCD, that little nuance is of utmost importance because it does capture EXACTLY the essence of whatever I wanted to convey. When all else fails, I’ll blurt out an SAT word which invariably tends to piss off the person with whom I am speaking. I know they are thinking, "Seriously? Smart ass..," It’s written all over their face and besides, I do read minds. It's a curse.

Example? I was in the car with my daughter a few months ago and we were driving through some rural areas when a truck caught my eye. Why this was even a topic of conversation, who knows… maybe it was painted a pretty color or maybe we were both punch drunk from being in the car too long. Maybe you just can’t expect the city mouse to drive through cow country even if the city mouse is really living the suburban life. Could it have been I just grabbed the bottle of water beside me? No clue and I am SO DONE trying to figure out how these thoughts just zigzag in my brain. The point is, the truck resembled a concrete truck but it contained water.

Because I carry an enormous amount of useless information in my head, I knew this. And, I proceed to say something along the lines of, “The truck is transporting potable water.” HUH? WTF? Where did that come from?? Couldn’t you just say “drinking water?” What, you need to show off your vocabulary? But, I didn’t need to do anything… the word “drinking” or any form of it was simply not there. Potable was. I solved the problem by substituting a word.

That’s a work-around solution, meaning, not really a solution. It’s nothing more than a band-aid. There is a difference between “It’s on the tip of my tongue” and “word dropping.” I know, I do both. Not only can I can feel the difference, I will readily and gladly admit when it’s NOT a CB thing.

Why do I know? I haven’t a clue. But why must you ask??? The only answer I can offer is this. Perhaps you have great teeth or have been exceptionally lucky or were positively vigilant with your dental appointments?? I, however have a toothache.***

***Note: I am well aware this ending makes no sense unless you happened upon a blurb I wrote about attempting to explain the pain of a toothache to someone who has never actually experienced a toothache. It can’t be done. Similarly, it’s not possible to fully understand chemo brain despite how wonderfully it is explained. Some things you simply must experience on your own to get the full flavor!

Oh…. the movie? Did you think I would leave you hanging??? It’s “A Bronx Tale,” and the actor Lillo Brancato played the part of Robert DeNiro’s son, Calogero, just in case that was right on the tip of your tongue. Should you have any further entertainment questions, IMDB is a great source, or just start Googling words in any and all combos.

Postscript:

When Idelle and I first communicated a couple of months ago, I jokingly told her I owned a copy of her book and I’m sure it was one of the first ones off the printing press. As I began to think about what I might want to share on Idelle’s blog, I remembered that conversation. One of the most fabulous things I deal with regularly is a newer issue for me. I have a touch of OCD that seems to kick in all the time: The Details Matter.

With this in mind, it was ESSENTIAL for me to check Amazon because yes, the minutiae is far more important than the big picture. Thankfully, the good folks at Amazon have their act together and their diligence saved me countless hours of poring over credit card statements to locate the purchase.

At the very top of the page, I was informed, “You purchased this book on August 9, 2009.” I scanned the page for the publication date. July 14th. Idelle’s book was in my possession before there was a paperback or a Kindle edition. I will be sending my copy to Idelle for author signatures. It’s bound to be on par with Dickens. Yes, unintended but still, yes, a pun on “bound, “ and YES, seriously. The book is as important to “chemo brain” as is Dickens in the realm of great fiction.

Heartfelt thanks to Idelle for letting me be the court jester for a day and sharing some of my silliness on her blog! -- AnneMarie

What the Vitamins in Your Blood Tell You About Your Brain

2011-12-29T16:40:00.000-08:00

In an article just published in the journal Neurology (online version, 12-28-11), researchers identified three nutrient biomarker patterns (NBP) in blood that are linked to how well we think and reason.
Two NBPs showed favorable connections, included the plasma B vitamins (B1, B2, B6, folate, and B12), vitamins C, D and E, and marine omega-3 fatty acids.
A third NBP identifying high trans fats in the blood, documented poorer cognitive performance.

About 100 healthy elderly adults participated in the study and went through a battery of neuropsychologic tests of memory and thinking skills. A subgroup (about 40 people) also went through MRI scans to measure brain volume. Participants with strong vitamin BCD and E levels scored higher in attention, visuospatial skills and executive functioning (decision making, goal setting, reasoning, etc). They also demonstrated more total brain volume in MRI scans. Those with higher marine omega-3 fatty acid levels, also scored better in executive functioning.

Conversely, participants with high levels of trans fats, demonstrated worse overall functioning in the areas of attention, memory, language, and processing speed. They also had decreased levels of total cerebral brain volume.

Trans fats as well as saturated fats are poison. They clog our arteries which in turn increases our risk of heart attack and stroke. The vitamins looked at in this study and omega-3 fatty acids, are the good guys. To learn more, read chapter 17 ("Brain Food") of our book, Your Brain After Chemo. There you'll find information on brain-friendly antioxidants, fish oil supplements versus eating seafood to raise levels of omega-3 fats in our diets, and how colorful fruits and vegetables help stimulate the mind.

Another Study: Changes in Cerebral White Matter After Chemo

2011-12-23T11:07:00.000-08:00

Researchers (Sabine Deprez, MD, et. al.) at a university hospital in Belgium have added to significant evidence that cancer treatment affects attention, concentration, memory and how quickly we process information (psychomotor speed). It also decreases white matter in the frontal, parietal and occipital regions of the brain. Their study appeared this week in the online version of the Journal of Clinical Oncology.
This is not the first to look at how chemotherapy alters brain structure and function. In our book, YOUR BRAIN AFTER CHEMO, we report on a pioneering 2006 study published in the journal Cancer where a group of Japanese researchers (Masatoshi Inagaki, MD, Ph.D., et. al.) found that regions of the brain involved in learning, reasoning, and intuition, had shrunk significantly in women who had chemotherapy.

Both studies relied on neuropsychologic testing and brain imaging to form their conclusions.

To put these studies into context, read the Healthy Brain and Unhealthy Brain chapters of our book. The material will give you a good sense of what all these studies really mean and how changes in brain chemistry affect those of us who have been through cancer treatment, Then turn to the section, Q and A With Your Doctor, to find out which drugs are most suspect, whether tamoxifen or other hormonal drugs make chemo brain worse, and why certain people notice these changes more than others.

And finally, feel free to ask questions or offer an opinion in the comment box. I'll do my best to help.

Cancer Itself May Contribute to Brain Fog. Chemo Makes It Worse, Says a Stanford Study

2011-11-18T15:32:00.000-08:00

And now we have more evidence that chemo brain is real.

In the latest study published this week in Archives of Neurology, researchers at Stanford University found that women with breast cancer (regardless of whether they had surgery and chemotherapy, or just surgery alone), experienced reduced activity in parts of the brain responsible for working memory, planning and attention.
This suggests that disease itself may play a role in what we’ve come to know as “chemo brain.”

We discuss several similar studies in “Your Brain After Chemo.” The most well known to factor disease into the chemo brain equation was published in the journal Cancer in 2004 by a team out of M. D. Anderson. In that study, researchers found that about one-third of newly diagnosed breast cancer patients showed cognitive impairment prior to starting chemotherapy. That number nearly doubled upon retesting the group at the completion of chemo.

In the Stanford study, what is significant is that the women who also received chemotherapy were even MORE impaired in these areas, PLUS they had additional deficits. Patients in the chemo group made more errors in recognizing patterns in a problem-solving task, even when they took extra time to complete it.

Generally, women with more advanced disease receive chemotherapy. So the puzzle is, what part of these deficits is due to the chemo versus the cancer itself? Whatever the answer, the authors state this: “This study provides further evidence that primary breast cancer may cause measurable brain injury. Women treated with chemotherapy may show additional prefrontal deficits and have difficulty compensating…").

My Friend, Joyce Parker, Passed Away

2011-11-15T00:48:00.000-08:00

My husband Peter, Joyce & me at our son's wedding last year

Last Friday, my dear friend, Joyce Parker, passed away after a long battle with ovarian cancer. We met each other six years ago at a weekend retreat for women survivors and hit it off instantly.
Joyce had been diagnosed about two-and-a-half years earlier and I had just newly been diagnosed with breast cancer and was still struggling with the trauma of it all.
I'm pretty sure I had that deer-in-the-headlights look and Joyce noticed. Even though she was dealing with her own fears, she took an almost motherly interest in me. Her attention and kindness helped calm me, as we took long walks through the retreat campgrounds.

In the months and years that followed, we continued to find time for each other, meeting for lunch or an occasional walk near her beautiful home in Redondo Beach. I don't remember a time when Joyce wasn't in treatment or on "vacation" from treatment, yet she managed to keep up her busy psychotherapy practice and relished every moment with her children and grandsons. She was always upbeat and positive even during some of her worst days when I would sit with her during chemo.

Last year, even though Joyce was again in treatment, she flew to Seattle to attend my son's wedding. Her presence meant the world to me. She danced the night away with the rest of us and looked so happy and beautiful.

I will miss her more than I can say.

Another Resource: An E-Book on Chemotherapy

2011-09-30T18:02:00.000-07:00

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

Hi Idelle,

I wanted to let you know I've recently revised my book, "Making the Chemotherapy Decision" which still contains that very useful forward by Michael Van Scoy-Mosher, MD, MA.
As you know, the first three editions were published a few years ago to good reviews.
The biggest change is the inclusion of more chemotherapy drugs. I couldn't really include them all with all their side effects, but Dr. Van Scoy-Mosher was kind enough to assist in selecting some of the more important new drugs for inclusion. We went from listing the 64 most commonly used chemotherapy drugs up to listing 97, which shows you how many new drugs are being approved these days. Vaccines and other new developments are included, and of course the health insurance situation is constantly changing, as always. Also you'll be happy to know I included some information on "chemo brain," which you and Dr. Silverman are so magnificantly bringing to the attention of the world.

The fourth edition of Making the Chemotherapy Decision is available as an e-book from Kindle, Nook, Smashwords, and the other ebook sellers. The press has launched a website to promote the book, too.

Best regards,
David Drum

How to Advocate for Your Chemo Brain Care

2011-09-21T16:28:00.000-07:00

By Heather Flanagan, ARNP-C

Guest Blogger

Heather Flanagan is a board certified nurse practitioner in a private practice in Tampa, Florida. She completed her master's in nursing at the University of Florida in 2007
and has specialized in breast surgical oncology since 2008. Heather founded My Breast Cancer Answers just recently to provide support and resources for her patients and others.
The site includes printable checklists to bring to your doctors' appointments, important facts, news, a blog and a chat forum. Visit her at www.mybreastcanceranswers.com.

Chemo brain is something I had always heard about as an oncology nurse, but at first I thought it was just a cute little term coined for the forgetfulness people experience as part of their hectic treatment. I am embarrassed to admit it wasn't until last year when I realized how many women suffered from it.

There are many women I see at the office who complain of mental fogginess, forgetfulness, and difficulty working after chemotherapy. I've learned that many do not even realize they have chemo brain and the ones who do realize it, have a very difficult time seeking care for this condition. Others would have remained silent had I not brought up the subject and asked the right questions.

As a nurse I want to make sure my patients are getting what they need, so I try to recognize conditions or problems they may have as a result of their surgery and/or treatment. Unfortunately, most healthcare providers will only address a condition if you bring it up to them, so you must learn to advocate for yourself.

Chemo brain is so different because it is much like chasing a ghost. You know you see the phantom, but when you try to explain it to others, it is invisible. A phone call I received a month ago was what really prompted me to write this post. A woman, who is not a patient of mine, called my office desperately seeking advice for her chemo brain symptoms. She indicated she was unable to work, but could not find anyone to help her qualify for disability based on chemo brain. I realized at this point that I did not know enough about chemo brain and thus began my ghost hunt. I'd like to share with you what I've learned.

I understand the majority of you reading this blog are well versed in chemo brain and I know that many of you have read Idelle and Dan's book, "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus." I don't want to leave anyone out though, so I will include some basic knowledge.

What is chemo brain?
Technically speaking, chemo brain is a set of symptoms experienced by people after going through chemotherapy. The symptoms involve memory loss, forgetfulness, foggy thinking, etc. Chemo brain may last for several months or even years in some cases and symptoms vary greatly from person to person in both presentation and severity.

While all this seems fairly simple, many healthcare providers either do not know about chemo brain or feel it does not really exist. The dilemma for those affected is how to get help when their doctors don't believe it's a real diagnosis. If you're a newbie to chemo brain you may want to refer to this list of common symptoms.

What You Can Do
The first step is to make your ghost visible to your healthcare provider by listing your symptoms.

The second step is to keep a log/journal for a month starting from when the symptoms began. This will help you and your doctor see frequency and what aspects of your life are affected most. You may be surprised by how often symptoms interfere with your daily activities! Also, a healthcare professional will have a harder time dismissing your claims if you have your symptoms written down in an organized way.

Last, your journal will serve as legal documentation should you need it for disability.

Did you know that many people affected with chemo brain still score normally on cognitive tests? As a result, this condition may be diagnosed only after your doctor rules out other factors. Some other causes for your forgetfulness, foggy thinking etc. may include: anemia, hormonal changes associated with menopause, insomnia, and depression. These conditions may make chemo brain worse if they are present. Make sure to meet with your healthcare provider to have blood tests to rule out anemia and see if you are in menopause. You may find it helpful to keep track of number of hours you sleep per night and any difficulty you have sleeping. Consider taking a quiz to see if you could be depressed.

Seeing a Neuropsychologist
You will want to see a neuropsychologist, a person who specializes in treating conditions where memory and thinking are affected, to help you cope with chemo brain and get your life back. Ask your doctor for a referral.

A neuropsychologist may recommend stress relief techniques, coping strategies, cognitive exercises and tracking what makes your memory problems worse. Having chemo brain can be stressful and stress can lead to memory problems. You can help break this cycle by making sure you are nourished, rested, and well-organized prior to any stressful event.

Supplements and Medications
There are no supplements or medications specifically approved to treat chemo brain but some experts recommend Omega 3 fatty acids. Talk to your doctor about this. Some medications prescribed for other conditions may help as well. These include: Ritalin and Concerta used to treat attention-deficit/hyperactivity disorder (ADHD); Aricept, which is a medication for Alzheimer's; and Provigil, used to treat sleep disorders. You'll find a complete list in "Your Brain After Chemo."

Remember, the squeaky wheel gets the grease, so bring up your symptoms and discuss chemo brain with your healthcare provider. You are, after all, your best advocate.

Make sure you check out www.mybreastcanceranswers.com for all the latest and greatest in the breast cancer world. We look forward to having you as a part of our community!

Your Friend,

Heather
Founder, My Breast Cancer Answers

Additional Resource: Mayo Clinic

Learning Ukulele Has Helped My Memory

2011-09-07T17:23:00.000-07:00

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.
My daughters and I are in different classes, but at home we'll often practice and play music together. It's hard to explain, but when I'm playing the ukulele, I seem to forget about everyday worries -- it's so soothing and comforting. After playing, I feel more relaxed.

The idea behind the Hands on Healing program is to help us forget about cancer for a little while, and it really does help. The physical and mental scars are a daily reminder of what we've been through, but the program let's me focus on learning new songs, and I know the process is helping with my memory. Every time I learn a new song, I feel it is helping my brain to heal.

My husband just loves listening to us play. I think it must be more difficult for the co-survivor to see a loved one going through something painful. Sometimes when our girls and I are playing, I'll look up and see him enjoying the music, and I can see the appreciation in his eyes and smile -- it's an appreciation of the music and of life.

There are a lot of negative things that come with battling cancer. But as with everything in life, there are powerful positives. Roy and Kathy Sakuma and the Roy Sakuma Ukulele Studios have given me and other cancer survivors a special gift. Every week we get to open a new gift, learn a new song, relax with the music, and heal just a little more.

Chemo Brain May Last 5 Years or Longer After Stem Cell Transplant

2011-05-06T14:06:00.000-07:00

Hi Everyone,

There's new research out, this time from Fred Hutchinson Cancer Center. Karen Syrjala, PhD, and her team of scientists have found that patients who have undergone chemotherapy prior to receiving stem cell or bone marrow transplants to treat blood cancers, may suffer from some symptoms of chemo brain that are far more severe and long lasting than has generally been reported.

Although the 92 patients involved in the five-year study improved in some areas of cognitive functioning (multitasking, information processing, decision making), almost half showed no improvement in verbal learning and retention (word recall, sequencing of numbers and letters), or in motor dexterity (inserting toothpick-sized pegs into holes as quickly as possible).

Their findings have been published in the Journal of Clinical Oncology (May 2, 2011 online edition). To read the journal abstract, click here.

Ten Years After Treatment & Still Struggling With Performance Anxiety & Depression

2011-03-23T13:31:00.000-07:00

By Carol

Boston, MA

Guest Blogger

Ms. Davidson, Dr. Silverman,

Thank you so much for the book and the ongoing research. My experience is similar to many patients you profile. I'd like to offer some additional concrete examples that I've observed.

First, quick background - Br Ca Stage 2 ductal carcinoma treated with mastectomy, radiation, 8 rounds of chemo (Adriamycin, Taxol) followed by tamoxifen, then Femara. I was fortunate to be treated at the wonderful Faulkner Breast Center in Boston (now connected to Dana Farber). I'm 52 and ten years out of treatment; physically, I feel great.

As the radiation effects lifted, I came out of my major fog. No longer did it take 45 minutes just to write the grocery list only to be overwhelmed by the cereal choices! I worked as a senior manager throughout my treatment and started to feel I was getting my mojo back. But, the fog has not completely lifted even 10 years later. As someone who has been 'sharp as a tack' her whole life, this has brought on depression and performance anxiety.

I often say, "yesterday" when I mean, "tomorrow" and vice versa. When writing, I sometimes start in the middle of a word (e.g. the 'p' of Maple St.; then I go back and add the "Ma").

I now have trouble with maps and directions when previously I didn't need a map.

Packing for a trip is extremely difficult as I can't 'plan out' what I will need.

I have trouble mapping out a strategy for my department at work. I struggle to figure out the higher level actions vs. the details. Reading the newspaper is very hard. I often can't comprehend the first paragraph if the content is new to me.

Most challenging is the effort I must put in on everyday tasks. It takes longer to process thoughts and make decisions. And no one knows how much I struggle internally.

Thank you for the ideas in the book. I have already incorporated many of these. I also practice yoga and meditation, which has helped me live 'where I am'.

Carol

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

2010-12-27T14:38:00.000-08:00

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.

As a cancer rehabilitation physician who sees many patients struggling with chemo brain, I am very interested in finding ways to help the quality of life of patients with this problem. I'd like to briefly discuss the possibility and benefits of using an old tool to help this newly recognized problem: EXERCISE.

We all have heard about the many many benefits of exercise: reducing heart disease, improving lung function, supporting our bones, strengthening our muscles, fighting depression, and on and on. There is increasing evidence over the last decade that exercise may improve our memory and cognitive ability as well. Nobody is exactly sure why exercise may improve our memory and cognitive ability. Exercise seems to increase BDNF (brain-derived neurotrophin factor), which has been popularly referred to as the "fertilizer" of our neurons and helps improve the function and growth of our brain cells. Exercise also improves the brain's blood flow, oxygen uptake, and glucose utilization (the main source of fuel for the brain) -- all ways that may explain exercise's benefits for our brain function (Devine, 2009, "Physical Exercise and Cognitive Recovery in Acquired Brain Injury: a Review of the Literature").

Several interesting studies have demonstrated this idea (Colcombe, 2003, "Fitness Effects on the Cognitive Function of Older Adults: a Meta-Analytic Study"). In one study for example, healthy older adults were divided into two groups: one group participated in an aerobic exericse program for 6 months and the other only practiced a stretching regimen in 6 months. At the end of the study, the aerobic intervention group performed much better in testing of their attention system, memory, and executive function.

Perhaps even more interestingly, this study also included a functional MRI of the brain (which lights up areas of the brain that are activated) before and after the intervention. They found that the aerobic exercise group actually showed improved activity in the areas of the brain responsible for attention and executive function, providing more concrete evidence that exercise actually changes the way our brains are wired and how well it functions (Colcombe, 2004, "Cardiovascular Fitness, Cortical Plasticity, and Aging").

Other studies have suggested that incorporating resistance training exercises (such as weight training) with aerobic exercises provides better results than aerobic training alone (Smith PJ, 2010, "Aerobic Exercise and Neurocognitive Performance: a Meta-Analytic Review of Randomized Controlled Trials").

The major caveat of all the studies looking at exercise and memory: patients with chemo brain have NOT been studied yet. Therefore, we can't assume that these benefits are generalizable to people with chemo brain. But, given all the other benefits of exercise for cancer survivors that have been proven, I routinely try to outline a safe exercise program for all my patients having chemo brain symptoms.

For more information about the Cancer Survivorship and Rehabilitation Program at Cedars-Sinai Medical Center, click here or call (310) 423-2111.

New Book From Breast Cancer Sisterhood

2010-12-21T22:20:00.000-08:00

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.
Brenda is the founder of BreastCancerSisterhood.com and Barbra is a registered dietitian and doctor of naturopathy.

I finished the book in one sitting, mostly because it's just 82-pages long. But there's also something very compelling about Brenda's writing style that invites you in. She draws on her own experiences (ten breast cancer surgeries and eight rounds of chemotherapy) to discuss everything from the obvious (side effects of treatment) to the unmentionable (how to self-lubricate for more enjoyable sex after cancer treatment). Nothing is off limits.

One thing though: The authors cite no sources. That may be off-putting to some. Still, there's lots of common sense in those 82 pages. By the time you're done, you'll feel like you've had a really great conversation with a very likable and knowledgeable new friend who enjoys nothing better than telling it like it is.

Brenda has also published, "The Breast Cancer Caregiver: Husbands & Heroes, A Guide to Help You and Thank You for All You Do." The 42-page book (or booklet) covers about half of the material that's in Breast Cancer Sisterhood (including identical text in some instances). But Coffee changes her point of view and speaks directly to spouses or caregivers. "I wanted to grab men's attention upfront," Coffee wrote me in a note. "It's my hope they'll find some golden nuggets to make them better caregivers and role models and be present emotionally." For women in treatment who need more support from their significant others, this little resource could be a big help.

Her Employer Let Her Go After Cognitive Problems at Work

2010-11-22T00:02:00.000-08:00

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.

I had all the physical side effects: nausea, extreme fatigue, neuropathy, joint aches and pains, etc. But I also had cognitive issues which really affected my work in an inside sales/customer service

position. The company came up with a point system and you were assigned or subtracted so many points for each incoming call varying on the length of the call, availability in call queue, if you generated a quote or a sale etc. etc. etc. It was very demanding. Sometimes I had ten computer screens open.

At the height of my chemo I was having serious cognitive issues, stuttering, stammering could not think of the correct words, trouble focusing and concentrating and definite issues with multitasking. I
decided to go through cognitive testing during all this to try and protect my job. The results came back showing that I was "fine" except for my abilities to concentrate, focus and/or multi-task. My employer agreed to reasonable accommodations and put me on "special projects" with marketing and HR for only six weeks and expected me to be 100% at the end of that time period. All the while I was adjusting to Arimidex and was put on antidepressants so I would not have the major ups and downs, the roller coaster that is a wild, wild ride when your body is being stripped of estrogen.

My boss just didn't get it. She was on me on a daily basis treating me like a small child, "Karen you have to work faster, Karen did you understand? Karen we don't know just quite what to do with you, you are our first cancer survivor," etc. They made my life MISERABLE. My boss would ask me 'how long I thought it would take for me to get back to normal" and I would say I had no idea what to expect because I had never had cancer before that time. At my year-end review they said my job performance was not as good as that of my normal, healthy co-workers and I was let go.

People say we are protected against discrimination but that's not true. Even now when I go on job interviews when they find out I am a cancer survivor I am dropped into the rejection pile! The only way you can get around discrimination is to hire an attorney and sue, not my style, so sad!

And I still struggle with trying to understand why I do not qualify for some sort of government grant to go back to school and retrain for a position other than sales, which is a high stress multitasking nightmare. I hate to say this but if I were a drug addict or an alcoholic there would be all sorts of assistance available! I am a very positive person, so I know in my heart I will be okay.

Thank goodness I have been working as a volunteer since March of this year for our local Susan G. Komen Affiliate. Working with Komen in the local office on the Race For the Cure committee and community outreach programs has helped with my cognitive issues. I have improved tremendously this past eight months, I no longer stutter or stammer. I can think clearly, concentrate and focus but I STILL have issues with multitasking.

Sometimes I wonder if losing my job and having to not have another position after nine months makes it worth surviving the breast cancer! I don't like it when I think that way, it scares me. I pray every day that I will find another job in the near future! In the meantime, I STILL struggle with chemo brain because I am on oral chemo and will be for the next four years!

Thank you for allowing me to share my thoughts on Chemo Brain with you!

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

2010-11-15T00:14:00.000-08:00

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.I was told about this possible side effect in my "chemo education" class my oncologist's office has you go through before starting treatment. I don't think being forewarned served any purpose but to keep me from thinking I was crazy.

Working full time during treatment in the financial industry during one of the biggest financial crises our nation has seen was definitely a test of perseverance. I think it was around my 3rd or 4th round of chemo that I would start sentences and just stop talking because the words I was looking for weren't there. Conversations then started to begin with, "This chemo brain is difficult so please excuse me". By the 5th and 6th rounds it had become significantly worse; forming whole sentences was becoming difficult and dealing with demanding people was incredibly frustrating. As long as I had a task list and stuck to it I was okay. When somebody needed something and wanted to add a task or disrupt my routine I would really lose it.

After my 6th round of chemo a lot of the symptoms started to diminish. This took many months to feel close to normal again. There is a lasting issue I think is important to talk about. I was one of those people who love art and interior design. From an explanation of an idea I could visualize everything in my head that someone was explaining. I had memories of events that were like seeing color movies of my life in my head. Always thinking and creating...I loved this part of my mind. It was what made me who I was. I say was because it is a chore to recall anything now and even when I do it is a flat black and white image that allows me to still remember, but not feel. Explaining this is really difficult. My mind no longer wonders any more. It is very static. I don't feel like my new experiences stay with me either. Grasping for words is much less often, but still happens. My family tries to convince me it is because of O L D and not the residual effects of chemo...I know better.

I was one of those people who remembered every detail of my life...and was creating constantly.. I would give almost anything to have that back. Just not my life. So now life is a new norm.

(Other treatments/procedures: mastectomy with concurrent reconstruction, radiation, taking tamoxifen since June 08).

"I would rather be ashes than dust! I would rather that my spark should burn out in a brilliant blaze than it should be stifled by dry-rot. I would rather be a superb meteor, every atom of me in magnificent glow, than a sleepy and permanent planet. The function of man is to live, not to exist. I shall not waste my days trying to prolong them. I shall use my time." -- Jack London

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

2010-11-08T07:42:00.000-08:00

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.
When I first talked to an oncologist about it in late 2005, he suggested that I must have been fried before chemo. I'm a Phi Beta Kappa. I'm a Columbia Law School graduate, where I was managing editor of the law review and had the designation Harlan Fiske Stone scholar for all three years of school. When my health collapsed, I left an extremely demanding law firm - think "The Firm" by John Grisham - and got a job as a DA. I continue to work as a DA, but am "reasonably accommodated" under the Americans With Disabilities Act (ADA) by my employer. I was told by a neuropsychologist that doing legal trials may make me decline further. So I do other duties and hearings but not trials. I am dazed a lot, especially in the afternoon. Colleagues and management seem to understand my limitations.

A strange side effect of the chemo brain is that my investing aptitude has massively increased, and so has my wealth, since I suffered the damage. I have always been into investing since I was a teen, but had little money and was confused by all the investment chatter. My investing style involves little activity. It focuses on a few things, mainly a low price compared to value. I am a follower of Warren Buffett and use a long-term approach with few moves. Strangely, where before I was confused by chatter and talking heads, after chemo I perceived what was cheap clearly.

To people not familiar with Buffett-style value investing, what I say may seem counterintuitive. Detachment from the crowd helps. Detachment from fear and greed helps. Detachment from chatter helps. I was like the Pinball Wizard in the old song - no distractions, but just a few things I could understand surrounded by chemo fog. Also since money can do nothing for me to restore me, I am more free of fear and greed than I used to be.

The key is to understand the bad recall and bad attention and stay within what I can do.

Still, I need to keep my job and the research into chemo brain keeps suspicious employers from attacking chemo brain victims as malingerers. Chemo brain does not impact intelligence. It impacts recall, attention, word finding and results in chronic fatigue and fibromyalgia, but it does not impact intelligence. Even in 2005, the evidence was clear of the impact of chemo, and fortunately since then it's gotten much more developed.

So I'm a lucky one who remains employed. Anyone who raises the understanding about this life-altering condition of chemo brain is helping untold numbers of people to survive survival. To raise awareness, I am more than happy to share my story and do anything that I can do.

Other details: I'm 45 years old. I was on ABVD for six cycles - Adriamycin, Bleomycin, Vinblastine, Dacarbazine.

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

2010-11-01T15:43:00.000-07:00

Idelle Davidson

There sat Bill Moyers, the thoughtful, intelligent journalist I have long admired (who unfortunately retired from PBS last April) with Joseph Campbell (now deceased), the renowned scholar who may be best known (and misunderstood) for his philosophy to "follow your bliss."

In discussing how myths and stories across different cultures reveal universal truths, Moyers asked Campbell why people feel compelled to tell stories. Campbell explained it was probably for the same reasons that ancient humans told stories in their scratch-mark drawings on cave walls: to warn of danger, to record catastrophes, to boast of conquests, to thank deities, to make sense of the human experience.

And then Moyers added that it's kind of like these messages come to us in a bottle from a shore that others have visited first. And these messages tell us how others have made the passage and how we can make the passage.

I discovered the power of story while interviewing survivors for Your Brain After Chemo. Men and women described the toll treatment had taken on their bodies and minds. Their accounts were sometimes sad, sometimes angry, often hopeful and always poignant. And when appropriate, I would share my own story of going through breast cancer and chemo. I would also tell them about the research in the field of cancer and cognition.

They were grateful for this exchange. It confirmed they were not crazy, that they were not imagining their post-chemotherapy problems with memory and attention and word retrieval. In many cases it explained a treatment side effect they had kept to themselves out of embarrassment, simply because their doctors had not forewarned them.

In turn, I was grateful to connect with them and pay forward what I had learned about this post-chemo phenomenon we sometimes call "chemo brain." We handed off our messages. We eased each other's passage. At least for that brief moment we were a community. And that's what healing is all about.

Won't you share your story? Email me at IdelleDavidson@gmail.com

Testing for "Chemo Brain" as a Disability

2010-10-25T04:39:00.000-07:00

[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.If you read "Your Brain After Chemo," then you may remember Dr. Ferguson. He is an expert in memory and attention adaptation training (MAAT) at Eastern Maine Medical Center and we quoted him in our book. In fact, he and his colleagues led the first pilot study designed to help breast cancer survivors improve their post-chemo cognitive skills.

Has "chemo brain" made it harder for you to function at work? If so (or if not), feel free to share your comments here. -- Idelle Davidson]

Now, here's Robert Ferguson's post...

________________________________________

By Robert Ferguson, PhD

Attorney Joanna Morales' recent post regarding the Americans with Disabilities Act (ADA) legal standard for disability was highly informative. One theme resonating through her discussion was the complex nature of evaluating disability and why determination is done on a case-by-case basis.

For example, the precise number of individuals whose memory and attention function is affected by chemotherapy remains unknown. This is in part due to the vast array of different chemotherapies many patients receive.

Different Standards of Testing

Also, scientists themselves use different definitions of "impairment" in different studies. For instance, some researchers may define an impaired performance on standardized neuropsychological tests of memory as scoring one standard deviation (or an average point spread from an average score) on two out of a half-dozen tests, while another scientist may define impaired performance as three tests scoring one-half standard deviation away from average ("Average score" refers to the average of the sample of cancer survivors studied). So different studies can yield different averages (Note that scientists have made some headway in standardizing testing methods).

But Normal May Not be Normal

Adding to the confusion is that many, but not all, of the participants in the research on cognitive effects of chemotherapy score in normal neuropsychological test range. So the tests may not be sensitive enough to pick up subtle changes in someone's thinking abilities.

Tailored Strategies

In my clinical practice I treat cancer survivors with chemotherapy-related cognitive problems who come to me after completing treatment. I have found that in many cases, simple compensatory strategies and accommodations at work or home can really help. For example, one young woman who consulted with me was having difficulty concentrating on the job. She worked in a college administrative office where she was responsible for processing expense and reimbursement forms. Our first task was to review her work environment and her responses to it. She sat at a desk in an open space and so was subject to auditory and visual distractions. Also, one well-meaning, friendly co-worker would stop by her work space on the way to the coffee area to chat, interrupting workflow.

After we talked it through, she asked her supervisor to move her to a quieter area of the office with a vertical barrier in front of the desk. Her employer agreed to the move but wasn't able to provide the vertical barrier. As a compromise, the employee was allowed to wear headphones and listen to "white noise" or background music on her iPod. This also was designed to send a non-verbal cue to the talking co-worker that she was busy and engaged and could not be interrupted. We also worked on attention strategies. Finally, she learned techniques for being assertive (but still gracious). This included clearly stating to co-workers her need not to be interrupted unless it was pertinent to the job, and to save non-work discussions for breaks or lunch times.

Impairments Range From Mild to Severe

Of course, some individuals may experience more profound memory difficulties than the example above. They may simply not be able to perform their jobs at expected levels despite rehabilitative efforts, and/or there may be more than chemotherapy-related causes at play (for example, whole brain radiation treatments or recovery from a brain tumor).

Back to Testing

In that case, it would be good to see a licensed neuropsychologist who performs cognitive testing to identify more severe impairments. This could help justify a move to a less demanding position, support the employee's request for extra (but still reasonable) accommodations, or substantiate a claim for disability.

This kind of testing can still be useful even if the employee scores in the normal range (as mentioned above) as scores provide other types of information. Neuropsychologists can evaluate whether or not test performance is consistent with an individual's level of education or line of work. If it is not, that may indicate a post-chemo disability. They also can screen for anxiety or depression, which may be contributing to memory problems.

Eventually the scientific community will understand how to prevent chemotherapy-related memory problems and reduce the need for testing. For now though, we use the tools available to us. That means an individualized approach to rehabilitation so that people can move on with their lives.

Cognitive Changes After Treatment

2010-10-20T00:12:00.000-07:00

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?

2010-10-16T13:20:00.000-07:00

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.
Here's the headline: Mental Health: Fog May Be From Cancer, Not the Chemo.

I actually didn't see the article until I started getting emails from readers who had never heard that the disease itself might cause memory problems. And then I saw bloggers re-reporting the same provocative headline.

So I read the piece and then I searched out the source myself (from material presented at the 2010 American Society of Clinical Oncology annual meeting) and then I wrote to one of the authors of the study to get his take, just to verify.

And at least in this study, the research does not support the headline.

I'll explain in a minute but first, here's a summary of the study, "Prevalence of Memory Problems That Limit Daily Functioning in Adult Cancer Patients: A National Representative Sample of the U.S. Population."

To get their information, researchers used data collected on about 10,000 adults from 2001 to 2006 by the National Health and Nutrition Examination Survey (NHANES). Out of those 10,000 about 1300 said they had a history of cancer.

One of the questions researchers asked the participants was, "Are you limited in any way because of difficulty remembering or because you experience periods of confusion?" After controlling for differences in these groups, the researchers found that people who had been through cancer were 40 percent more likely to report memory problems than people who had not been through cancer.

But here's the thing. The NHANES database did not include any treatment information. So we don't really know from this study what caused the fog, whether it was the chemo, or hormonal therapies, or radiation, or other medications, or depression, or an inflammatory response, or something else. And in fact, the New York Times quotes the lead author saying just that.

Is it possible that "disease itself" does cause "chemo brain?" That is an important question and something that has been the subject of several studies. I'll talk about that more in future columns but yes, a connection has been documented in the research between cancer and cognitive impairment (as is there a connection between chemotherapy and some other therapies and cognitive impairment).

But back to the NHANES data. What exactly does it suggest? That many people who have had cancer also happen to have memory problems. That is disturbing, to be sure. But to publish a headline that reads, "Fog May Be From Cancer, Not the Chemo," is simply not in evidence here.

What do you think? -- Idelle Davidson

A Book for Young Adults With Cancer

2010-10-13T23:07:00.000-07:00

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.

I'm outside the intended age group for this book, so I didn't expect that it would grab me the way it did. But Kairol has a way of drawing you in, almost placing you inside her head so that you feel what she feels, so that you see what she sees. Kairol begins with her own story. At age 27 she is single and working at a nothing job with minimal health insurance when she is diagnosed with stage 2 thyroid cancer that has metastasized to her lymph nodes.

She quickly learns how few services are available to her and to the 70,000 young adults who are diagnosed with cancer in the U.S. each year.

As she writes: "With this many cancer patients sniffing anesthesia in operating rooms, absorbing beams of radiation, and sitting in chemo chairs across the country, I was astounded that I and so many others felt so alone. I discovered that other young adult cancer patients wanted to share with me in intimate conversation what they were not willing to reveal in support groups, what they would not tell their doctors or therapist, and what they had a difficult time saying to their friends and family."

So recorder in hand, she travels throughout the U.S. to collect the stories that make up her book. Among them are that of Nora, 24, a lymphoma patient who had no health insurance at the time of her diagnosis. She and her mother, who also has cancer, take care of each other during treatment. There is Amilca, 26, with leukemia who says that doctors underestimate her intelligence: "[They say] 'We'll cross that bridge when we come to it,' and I'm like, 'No, [expletive] you. This is my body, I'll cross it right now.'" And Seth, 33, lives with lymphoma which devastates his parents who have already lost one son to cancer.

Woven throughout these life snapshots, we learn a little about Kairol and how it's possible to find a soul mate even when you've been diagnosed with a catastrophic illness. We hear conversations about fertility, sexuality, spirituality and about medical insurance and navigating the healthcare system. And we find tons of resources with phone numbers and websites.

If I had any disappointment in the book, it would be that it didn't include the struggles in this age group of dealing with cancer-related cognitive deficits. But I also know from writing my own book, that it's hard to include everything and please everyone.

That said, if you're in your 20s or 30s and dealing with cancer, or if you know someone who is, get a copy of the beautifully written "Everything Changes." You'll be glad you did. -- Idelle Davidson

Is "Chemo Brain" a Disability Under the Americans With Disabilities Act (ADA)?

2010-10-04T13:27:00.000-07:00

In researching and co-authoring "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus," I interviewed countless survivors who reported often debilitating cognitive issues following treatment for cancer. I wanted to know if there were any legal protections available to them in the workplace, or at home if they could no longer work.

To find out, I spoke with Joanna Morales, an attorney and the director of the Cancer Legal Resource Center (CLRC), a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles. The CLRC provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer. I hope you find the information helpful. -- Idelle Davidson

Q and A With Joanna Morales

ID) What is the legal standard to qualify for a disability?

JM) To have a disability under the ADA's definition of disability, you have to have a physical or mental impairment that substantially limits major life activities, have a history of an impairment, or be regarded as having an impairment.

Major life activities have traditionally been things like walking, talking, eating, breathing and working. But when the ADA amendments passed in 2008, they specifically delineated some additional major life activities that made it easier for someone with cancer to actually use the ADA's protections.

And those activities include sleeping, concentrating, thinking, communicating and operation of major bodily functions.

So, particularly the concentrating and thinking activities really speak to the side effects from treatment that we often call, "chemo brain."

This really makes it much easier to argue that the effects of chemo brain are substantially limiting major life activities. That by itself has made it easier for people with cancer to use the ADA's protections.

Now what that means is you really get two types of protections in the employment arena. One is that you're protected against discrimination. And two is that you get access to reasonable accommodations.

ID) What would those accommodations be?

JM) Reasonable accommodations are things that could accommodate you in the workplace if you are experiencing chemo brain. That might mean having a note taker in a meeting or maybe your employer would buy you a tape recorder so that you can tape record meetings to help you remember what was agreed upon in that meeting.

That might also mean help with organization of your workspace or providing things that are going to make the concentrating piece, or sometimes the memory piece, easier for you in the work environment. So maybe your employer might provide access to a hand-held electronic device such as a PDA (personal digital assistant) so that you can take notes and have access to your contacts, calendar, and to-do list all in the same place.

So there are lots of pretty simple things that can be reasonable accommodations and can ease your experience with chemo brain and are relatively easy for an employer to provide.

ID) But "chemo brain" may not be severe in every case.

JM) That's correct. We can never say across the board that everyone who experiences chemo brain has a disability, or even that everyone who has cancer has a disability. That analysis is always done on a case-by-case basis. It's how your particular diagnosis is affecting your particular major life activities and whether or not that effect is substantial.

ID) Who makes that evaluation?

JM) Eventually if it were to go to that point, it would be a court. So you would hope that you wouldn't have to go to court to make the argument that you do have a qualifying disability.

But initially if you're having that conversation with your employer, your employer is going to get that information from your health care team. All you may need is just a letter from a health care professional that speaks to your particular medical condition and your ability to function in the context of major life activities.

ID) So the employee makes a request for an accommodation. What happens next?

JM) Once a request for an accommodation is made, the employer and employee are supposed to engage in what is called the "interactive process," so that there is a discussion about the accommodations that are being requested and if there are perhaps alternative accommodations that would work better. It's supposed to be a back-and-forth dialogue. But ultimately the employee is supposed to get an accommodation.

Now if along the way the employee doesn't feel as if he's getting heard, there are different options. One is mediating with the employer, filing a complaint with the state fair employment agency or the federal Equal Employment Opportunity Commission (EEOC) or pursuing legal representation. That can be something as simple as a lawyer writing a letter on behalf of the employee, reminding the employer of their obligations under the law and what the employee is asking for, or it can be much more aggressive depending on the circumstances.

ID) What if you just can't work anymore even with accommodations?

JM) Then disability benefits are a pretty good option if you qualify for them. There are lots of different types of disability benefits. There are some states that have state disability insurance programs. There are employers who offer short and long-term disability insurance plans through your work. You can also buy your own private short or long-term disability insurance plan. There are also the two federal long-term disability insurance plans available through the Social Security Administration: Social Security Disability Insurance (SSDI), and Supplemental Security Income (SSI).

ID) What are the qualifications for each one?

The qualifications for each are very different. In California, for example, the California State Disability Insurance (SDI) plan has the lowest standard of disability. You just have to have a medical condition that is keeping you out of work at least eight days. That's probably the simplest definition of disability.

For SSI and SSDI, you must have a disability that's expected to last longer than a year and is keeping you from substantial gainful activity.

And then for private plans, whether they are something you purchase yourself, or are purchased through an employer, the contract is going to define disability and the terms of the policy.

ID) What are the specific disability benefits for each program?

It depends on the program. In California, SDI will pay approximately 55% of your income while you were working. It's a formula. They look back over a certain number of quarters of what you were making and then it's 55% of that amount.

Then there are the two federal long-term programs. SSI is a flat monthly rate and SSDI pays benefits based on what you have paid into the Social Security system over your work history.

ID) What if you don't work? Perhaps you're retired or you're a stay-at-home parent where functioning at home is difficult. What then?

JM) If you aren't working, but are in a situation where you are experiencing chemo brain and maybe other long-term side effects from treatment such as fatigue or depression you may qualify for other assistance programs. Getting assistance around the house, whether it be paying bills or daily chores, can bring up a number of different areas of the law. So if it's financial management, perhaps you would want to consider a power of attorney for financial affairs. If it's to keep track of the day-to-day things, you may be able to qualify for in-home support services, depending on your income and whether you qualify for that program.

ID) Where does that assistance come from?

In-Home Support Services (IHSS) is a program related to Medicaid (Medi-Cal in California) that is available in some states (contact the Cancer Legal Resource Center for state information). And it's specifically available to assist people who would prefer to stay in their own home, rather than be forced into moving to an institutional environment like a nursing home. And they can have someone come into their home and help them.

IHSS will do an assessment to see what your capacity is and what you need help with and how many hours per week you require assistance, then they come up with a formula and they will pay for part or all of that care. But you do need to have an income level that qualifies you for the Medicaid program in your state.

ID) How can people reach you if they have questions?

JM) People can contact our national, toll-free telephone assistance line at 866-THE-CLRC (866-843-2572) or visit our website at www.CancerLegalResourceCenter.org for more information about these topics and other cancer-related legal issues.

To learn more about "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus" by Dan Silverman, MD, PhD. and Idelle Davidson, visit www.YourBrainAfterChemo.com or find the book on Amazon.

For permission to reprint this article, please send an email to IdelleDavidson@gmail.com.

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

2010-10-01T00:17:00.000-07:00

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.
The new changes to health insurance that took place on September 23 could save you money and even save your life.

That's why I wanted to write this easy-to-understand guide to the new insurance changes. These new changes are your legal rights. If an insurance company is not complying with these regulations, you can
and should hold them accountable so you get the maximum protection and coverage guaranteed to you by law.

I love the Campaign for Better Health Care and have used their guide adapting it slightly for cancer patients. If you have additional questions, ask in the comment section below and I'll bring an expert on board to make sure we get them answered.

Below are changes that apply to plans beginning or renewed after September 23, 2010. For many people this means the provisions actually take effect when they renew their plans in early 2011.

1. COVERAGE FOR YOUNG ADULTS

If you're a YA without health insurance, you can be covered under your parent's insurance plan up until your 26th birthday. This includes YAs who are married and YAs who aren't students.

FYI: Young adults that already have a health insurance offer through an employer may not be eligible.

2. FREE PREVENTIVE CARE

Your insurance plan must cover preventive services and screenings, without co-pays or deductibles. Here are just a few of the preventive services and screenings on the list that I thought pertained to young adults and cancer patients. You can view the full list too.

- Depression screening

- BRCA counseling about genetic testing for women at higher risk

- Breast cancer chemoprevention counseling for high risk women

- Cervical cancer screening for sexually active women

- Sexually transmitted infection prevention counseling

- STI screenings for syphilis, chlamydia, gonorrhea

- Immunizations for adults - including HPV, influenza, and pneumonia

- For pregnant women: folic acid supplements, breast feeding support, screening for hepatitis B and anemia plus much more - see the list

- Alcohol misuse screening and counseling

- Obesity screening and counseling for all adults

- Tobacco use screening and cessation interventions for tobacco users

- Diet counseling for adults at higher risk for chronic disease

FYI: Colorectal screenings are included on this list for age 50 and over; mammograms for age 40 and over. However, I suggest you challenge your insurance company to cover these if you are younger and medically in need of these tests. (See below for your right to appeal insurance company decisions.)

"Grandfathered" plans don't have to comply with this rule. To learn more about what a grandfathered plan is, visit FamiliesUSA and read the 4th item under 'Big Picture'.

3. NO MORE LIFETIME CAPS

Insurers are now not allowed to set limits on your lifetime benefits coverage, no exceptions. This means you will no longer have to worry about "capping out" on your coverage.

FYI: While there are no more lifetime limit caps, there are still annual benefits caps that have been raised to $750,000. These will be fully eliminated in 2014.

4. NO MORE RESCISSIONS

Insurance companies are no longer able to cancel your coverage for unjust reasons, a practice known as rescission. Before, if an insurance company got hit with a big claim, they could find an unintentional error on your application (even from years ago) and use it as a basis to deny you coverage; not anymore. This applies to all insurance plans.

FYI: If you intentionally commit fraud or hide something on your application, your insurance company can still rescind your coverage.

Your insurance company must give you 30 days notice if they intend to rescind your coverage, to give you time to appeal.

5. RIGHT TO APPEAL INSURANCE COMPANY DECISIONS

You'll now have the right to appeal decisions your insurance company makes about your health care (such as refusing coverage) to an independent, third party reviewer. How this appeals process actually works will vary by state and by plan.

FYI: This doesn't apply to grandfathered plans.

6. NO MORE DENYING KIDS WITH PRE-EXISTING CONDITIONS

This applies for children up to age 19. So if you've got kids, read this one carefully. Insurers are required to provide coverage to children with pre-existing conditions, such as asthma or hemophilia. This applies to families with group plans and non-grandfathered individual plans.

FYI: Grandfathered individual plans do not have to comply with this provision (though group plans DO), and some insurance companies will no longer offer child-only policies.

[Kairol was diagnosed with cancer at 27 and discovered two days later she had been dropped by her insurance. Since then, she has spent the last decade fighting for her own health insurance, advocating for other young adult cancer patients, and researching and writing "Everything Changes: The Insider's Guide to Cancer in Your 20s and 30s."

For more financial assistance resources and tips for coping with cancer at any age, check out Kairol's blog Everythingchangesbook.com.]

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

2010-09-29T21:07:00.000-07:00

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.

This story is reprinted from a press release provided by Indiana University School of Medicine. Let me know what you think.-- Idelle Davidson

INDIANAPOLIS -- Researchers at the Indiana University Melvin and Bren Simon Cancer Center have published the first report using imaging to show that changes in brain tissue can occur in breast cancer patients undergoing chemotherapy.

The cognitive effects of chemotherapy, often referred to as "chemobrain," have been known for years. However, the IU research is the first to use brain imaging to study women with breast cancer before and after treatment, showing that chemotherapy can affect gray matter. The researchers reported their findings in the October 2010 edition of Breast Cancer Research and Treatment.

"This is the first prospective study," said Andrew Saykin, director of the Indiana University Center for Neuroimaging and a researcher at the IU Simon Cancer Center. "These analyses, led by Brenna McDonald, suggest an anatomic basis for the cognitive complaints and performance changes seen in patients. Memory and executive functions like multi-tasking and processing speed are the most typically affected functions, and these are handled by the brain regions where we detected gray matter changes."

Saykin, who is the Raymond C. Beeler Professor of Radiology at the IU School of Medicine, and colleagues studied structural MRI scans of the brain obtained on breast cancer patients and healthy controls. The scans were taken after surgery, but before radiation or chemotherapy, to give the researchers a baseline. Scans were then repeated one month and one year after chemotherapy was completed.

The researchers found gray matter changes were most prominent in the areas of the brain that are consistent with cognitive dysfunction during and shortly after chemotherapy. Gray matter density in most women improved a year after chemotherapy ended.

For many patients, Saykin said, the effects are subtle. However, they can be more pronounced for others. Although relatively rare, some patients -- often middle-aged women -- are so affected that they are never able to return to work. More commonly, women still will be able to work and multi-task, but it may be more difficult to do so.

The study focused on 17 breast cancer patients treated with chemotherapy after surgery, 12 women with breast cancer who did not undergo chemotherapy after surgery, and 18 women without breast cancer.

"We hope there will be more prospective studies to follow so that the cause of these changes in cancer patients can be better understood," Saykin said.

Saykin and his colleagues started their research at Dartmouth Medical School before finishing the data analyses at IU. A new, independent sample is now being studied at the IU Simon Cancer Center to replicate and further investigate this problem affecting many cancer patients.

Other researchers included lead author Brenna McDonald, assistant professor, Department of Radiology and Imaging Sciences, IU School of Medicine; Susan Conroy, M.D.-Ph.D. student; Tim Ahles, professor of psychiatry, Memorial Sloan-Kettering Cancer Center, N.Y.; and John West, an imaging researcher at the IU Center for Neuroimaging.

The study was supported by a grant from the Office of Cancer Survivorship of the National Cancer Institute, National Institutes of Health and the Indiana Economic Development Corp.

5 Ways to Self-Empower Even the Foggiest Recovery

2010-09-20T00:18:00.000-07:00

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.

1. Develop a healing intention - Clarity often comes and goes during illness and recovery. One thing that helps is to be clear about what we're trying to achieve. Keeping the end goal in mind (by writing out a description, listing details, making a vision board) helps the brain stay focused on making the right pictures, which supports recovery.

2. Education, education, education - The more we as patients know and understand the better we can advocate for ourselves, make good decisions and effect progress. This doesn't mean we have to know everything all at once. Learning in bits and pieces on a good day, in a clearer hour or moment, is enough to give us the power of knowledge. That feeling of empowerment can be key in meetings with doctors, therapists, family and friends, plus other support system members.

3. Develop good connections - Sometimes the last thing we feel like doing is the first thing we need to do. When we're cognitively impaired we don't really feel like making friends. But it's just then that we need to buddy up (with new or already familiar buddies) and connect. Having good connections with friends, family and medical staff means there's someone on our side to advocate for us when we are having a bad day and can't do it for ourselves.

4. Make the effort to communicate - One thing that really hinders the care we need is how we verbally shut down in the brain fog. However, our care vastly improves when we muster our energy to express what we're experiencing, what we need, what is all right and what is really, really wrong. Making lists, keeping logs or using a tape recorder can help us effectively express what others need to know.

5. Commit to the journey - It's so tempting to give up, give in and shut down when we feel out of control, not ourselves and without the energy we're used to. Still, despite those moments of despair we each have to make a commitment to ourselves that we won't let the situation get the best of us. Find one thing that makes you feel like yourself, brings you joy, or refuels you and use it as often as you need to keep you centered on your path through and out the other side of any part of the illness and recovery process.

Managing and recovering from PTSD was an enormous challenge for me as I had difficulty concentrating, remembering simple things and processing even the shortest thought. What I learned, though, by putting in place each of these five self-empowering things, is that we all have deep healing potential; the trick is learning to tap it. Giving ourselves concrete actions can lead us straight to that potential, and also show us how to leverage it.

Michele Rosenthal is the founder of www.healmyptsd.com. Her recovery memoir, Before the World Intruded: A Memoir of Trauma, Survival, Identity and the Pursuit of Joy, will be released in 2011. Follow her on Twitter @micheleptsd.

Hypogonadism (Decreased Hormones) in Male Lymphoma Patients After Chemo

2010-09-16T15:47:00.000-07:00

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
frequently than survivors under 40, as reported by the Norwegian group in the British Journal of Cancer article you mentioned. A more recent study by the same group, published in the Journal of Clinical Oncology in December, has found that the blood endocrine lab abnormalities also correlate with impaired sexual function, so someone experiencing such symptoms should overcome any reluctance he may have to bring them to the attention of his physician.

Stand Up 2 Cancer AND "Chemo Brain"

2010-09-15T14:41:00.000-07:00

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?

2010-09-13T09:54:00.000-07:00

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.

And this is what they told me: The key to a child's success in school is his or her learning style. First you identify it. Then you teach to that strength.

It all made perfect sense to me. After all, one of my sons memorized his times tables by singing them to me. Ah ha, I said, he's definitely an auditory learner! My other son built the most beautiful structures out of branches and found objects. Later, he took classes in architecture. Again, I was sure of his learning style: a tactual-kinesthetic learner, I proclaimed. As for me, I had to be a mixture of visual and tactual-kinesthetic styles. Didn't I always need to highlight key points in my textbooks PLUS write a summary of what I just highlighted in the margins PLUS take notes on my notes?

Well, it turns out that the whole learning style idea may be right up there with the theory that the earth is flat. In an article out last week in the New York Times ("Forget What You Know About Good Study Habits"), writer Benedict Carey takes us through some classic studies and interviews experts in cognitive psychology. And we are told there is no substantiation -- zero -- for this concept of successful learning styles. Furthermore, remember that advice your mother gave you to study in a nice quiet room without distractions? You can throw that out with your Betamax videocassette player.

The brain works better when you buckle down in the presence of background sensations, these experts say. One example is studying the points of the Marshall Plan with the "jade-curtain shade of the willow tree in the backyard," says Carey. (Isn't that nice writing?) As he explained, "Forcing the brain to make multiple associations with the same material may, in effect, give that information more neural scaffolding." In other words, partnering one cognitive impression with another may help you retain what you learn.

The writer reports on other studies as well, including one showing that participants were better able to identify painting styles after viewing each artist's work in a collection among other artists, rather than studying one artist's work in isolation. So this would refute the belief that immersing yourself in a subject is the best way to learn. Instead, back to that "scaffolding," the brain seems to attach deeper meaning by comparing and contrasting patterns.

This might be good information for those of us who have been through chemo and want to learn more efficiently. Then again, who knows if these studies will prove obsolete in 30 years. Remember the Woody Allen movie, "Sleeper?" As Allen's character wakes up two centuries from now, he finds that his diet of wheat germ and organic honey isn't nutritious at all. Instead, the new health foods are steak, hot fudge, cream pies and deep fat.

As for me, I like the idea of learning by "scaffolding," but I'm not sure I'm ready to trash the concept of learning styles. And although I won't be eating steak, cream pies or deep fat any time soon, I'm more than willing to take on hot fudge as a health food. See how open-minded I am?

A Note From Bobbi

2010-09-12T10:50:00.000-07:00

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.

As you know (as I was interviewed for and quoted in your book), I was diagnosed with HER 2 ER/PR+++ breast cancer in October of 2005 and received ACT over the course of a year. After completing chemo I found myself slushing through the fog. When I talked about this with my oncologist his response was that I was just getting older. Why yes, I was, but this felt like really really older :)

Hence I felt as if I were losing my mind. I could no longer concentrate long enough to read (I still cannot), tasks that were easy for me I could no longer complete etc etc. I worked with disabled people and for the first time ever, I so understood how they feel when they want to do something and just cannot accomplish it.

Somewhere I heard about your upcoming webcast. My husband and I sat on the edge of our chairs listening to it while sobbing our eyes out the entire time. Finally someone had acknowledged what I was going through and I was not crazy.

After that I was tested by a wonderful neurophsychologist who again confirmed that I do have deficits and I am not crazy!

Thank you once again for saving my life. I will be a 5-year survivor this October 2010.
Bobbi

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

2010-09-07T21:34:00.000-07:00

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.
This does not mean you simply have to "live with" the symptoms or their effects

on your quality of life. Without knowing you, it sounds as though you have had neuropsychological testing to objectively measure your various memory and attention capacities and tried out some treatment approaches. Our group has been working on a cognitive-behavioral treatment (CBT) for memory and attention problems after chemotherapy. CBT involves modifying thinking and behaviors to help individuals cope with and self-manage symptoms and their impact on daily lives.

As you point out, you have had consequences in your occupational, financial, and social aspects of life. CBT can help foster adaptive responses not only to the memory symptoms themselves but the quality of life impact they have. The program we are developing and testing is a short term (8-visit) approach that teaches methods to compensate for memory problems (such as keeping an organized schedule, verbal rehearsal) and make adaptive changes to life demands and stress. We do have some evidence that this CBT approach may help with quality of life and verbal memory performance, but much research remains to prove this.

I would suggest checking your state's psychological association and ask for psychologists in your area who are well-versed in CBT. Another national resource is the Association for Behavioral Therapies (www.abct.org). A psychologist with expertise in CBT may provide you a non-drug common-sense approach to dealing with cognitive effects of chemotherapy.

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

2010-09-05T00:15:00.000-07:00

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.

I'm guessing that if you've had chemo and have experienced the fog that often follows, then you know what I'm talking about, right? It's not that you can't comprehend language, it's that you can't retrieve it. It's like the arcade game with the crane where you try to scoop up the two-penny plastic key chain and then five-dollars-worth-of-quarters later, it's stuck in the chute.

In a 2006 study of the psychosocial side effects experienced by 26 women undergoing chemotherapy for breast cancer, language (including fluency, verbal repetition, reading, and writing to dictation) was the most severely affected cognitive process, followed by memory. (Source: F. Downie, Psycho-Oncology 15 -2006: 921-930). That's not entirely surprising considering that chemotherapy not only may affect language but the speed in which we process information.

One of the people I interviewed for "Your Brain After Chemo" had this to say: "It is painful when people look at me with confusion while I am trying to talk. I know that I'm not making sense, and I don't know how else to talk. When it happens I die a million deaths and feel very dumb."

Have you experienced word retrieval problems during or following chemotherapy? Have you found ways to compensate? If so, what works for you?

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

2010-08-31T23:58:00.000-07:00

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.

First she forgot her purse and had to drive home to get it. She left a second time, only to realize she had forgotten her grocery list. Again she returned home. This went on six times, each time she needed something else. Finally, ready to throw herself under the nearest bus, she carefully took inventory. Yes, she had her purse. Yes, she had her list. Yes, she had her driving glasses. Yes, she had enough checks and change for the meter. And yes, she had the directions she needed for an errand she would run after shopping.

Finally, she got to her car. She opened her purse, felt for her keys and realized she had left them in the house and she was locked out!

So cognitively speaking, what was going on here? Problems with multitasking and organization were pretty evident (see part 2 in this series about executive functioning). But according to one neuropsychologist I interviewed, the real culprit may also be her brain's slower processing speed, one of the most common deficits of all among people who have been through chemotherapy.

Everything takes longer. That's because your brain is like this huge cabinet stuffed with files and they're all out of order, said the expert. Eventually your brain will sift through and find what it needs, but not without tremendous effort.

Has this happened to you? What was your experience like?

Stay tuned for part 4: problems with WORD RETRIEVAL

Hear My Interview on Empower Radio

2010-08-28T03:41:00.000-07:00

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

2010-08-25T19:13:00.000-07:00

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).

The best way to describe this role of our brains is to think about the jobs of corporate executives. What do they do? They set goals, make decisions, solve problems, organize information, and follow through on tasks. They act quickly in a crisis and exercise impulse control (okay, some CEOs are famous for blowing their tops and aren't that great at the other things either, but let's just work with this definition...)

Before chemo (B.C.), they may have competently juggled a household, kids and work, kind of like Martha Stewart but without the designer oven. Now multitasking becomes impossible. Forget about listening to their kids while the TV is on, it's not going to happen. They may have a hard time retrieving information. Sometimes they wish they hadn't said those things to their bosses, or worse, their mothers-in-law. They have trouble making decisions, keeping track of things, and planning ahead.

Why does this happen? Because the connections between the front areas of their brains and deeper brain circuits are impaired.

How did they get impaired? Was it really the chemotherapy? The hormonal therapy? The anesthesia at surgery? The steroids? The cancer itself? A genetic predisposition? What we know is what has been documented in studies (mostly with breast cancer and lymphoma survivors). And chemotherapy appears at least partially responsible. But the drugs also could be part of a cascade of events that affect the way we think. The science is fascinating and you'll hear more about that later.

For now, look for part 3 in this series on the cognitive domains of "chemo brain." Next up: INFORMATION PROCESSING SPEED, perhaps the most common deficit of all.

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

2010-08-23T00:05:00.000-07:00

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...

EXECUTIVE FUNCTIONING (You have problems making decisions, keeping track of things, multitasking, etc.)
INFORMATION PROCESSING SPEED (Your brain still works but a sea cucumber moves faster).
LANGUAGE (What the heck is that word?)
ATTENTION and MEMORY (distraction is the devil)

If you're struggling with any of these issues, it may help for you to know that you're not alone. In researching and writing our book, "Your Brain After Chemo," I interviewed many, many survivors who poured out their stories. (I also went through chemo and experienced some of the same issues - perhaps that's why). Many told me how changes in their thinking abilities after treatment had affected their competence at work and home. Marriages had suffered. Socially, some had withdrawn, embarrassed that others would notice they weren't the sharp person they used to be.

Oncologists don't always disclose to patients that cognitive impairment is a potential side effect of chemotherapy (a topic I vent about a lot!). So hopefully this series of blogposts will help fill in the knowledge gap.

If you believe your thinking abilities have declined, ask your doctor to refer you to a neuropsychologist, a specialist who can evaluate how you process information.

You will also find more detailed explanations about these cognitive domains in our book, "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus." There we have an entire chapter devoted to how neuropsychologists measure forgetfulness and other problems with thinking and mood. We offer strategies to help.

For now, click on the "follow this blog" icon at the top of your screen and stay tuned for part 2, "What You Need to Know About Executive Functioning."

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

2010-08-18T13:12:00.000-07:00

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,
and have had my life turned inside out not by the cancer itself, but ironically from the life-saving treatment. I was fortunate to have Dr. Virgilio Sacchini from MSKCC in NYC as my gifted surgeon, and Dr. Robert Cooper from Praxair Cancer Center in Danbury CT as my oncologist. I will always be grateful to my medical team for saving my life after I discovered the lump in my left breast in the fall of 2004. My daughter was 4-years old at the time, and she is my reason for my continued quest to regain my quality of life.

The topics you discuss have all been brought up in the past 5 years to my oncologist; specifically, WHAT HAPPENED TO MY BRAIN? I look at "Before Cancer" photos and do not even resemble that woman in personality, mood, capacity, etc. at all. I have lost a portion of myself, and have been told it is generalized anxiety, depression, normal aging, "life", but KNOW that I have suffered a mild form of brain damage from chemo. I used to stand in the aisle at the grocery store and completely panic at the idea of selecting what I needed. Also, losing my car, keys, wallet, unable to pull an outfit together for my daughter in her overnight bag if she had a sleepover, bouts of paralyzing depression, rage and uncontrollable sadness. As I was finishing my radiation treatments, my father was diagnosed with multiple myeloma and died within a year, and my marriage has also failed as a result of subsequent stresses related to the cancer and treatment. I am a different person today than I was before treatment, and am desperate to find my new NORMAL.

I have tried Effexor, Prozac, Cymbalta, and even Provigil to combat the detrimental effects left from chemo, to no avail. Even today I struggle with lost vocabulary when speaking, and when I have too many choices I am completely overwhelmed. Recently, I have been advised by a naturopath to investigate the possibility of adrenal/thyroid fatigue. I go for saliva and blood tests soon, and am interested to see if this might be a possibility. It was suggested that I have had a severe iodine issue for years, hence the cancer and mood problems.

I want to thank you for your book, and applaud your efforts in raising awareness of the damage caused by chemo. There is an enormous population of young women survivors that are struggling to have their voices heard, and to work toward a cure for cancer that will not destroy one's quality of life.

-- Ellen K.

Questions About Memory Loss From a Hodgkin's Lymphoma Patient

2010-08-15T21:48:00.000-07:00

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 chemotherapy regimen have ranged from little or none, to debilitating.

As to why patients are not warned of potential memory loss before undergoing chemotherapy, the reasons are also varied... some oncologists believe that advising patients about the possible cognitive side effects might increase their propensity to experience them; others believe that there is no real choice anyway about what the right course to follow would be, so why complicate matters with consideration of these issues; and there are others who still are even skeptical about the existence of the chemo/cognition connection.

It sounds like you are aware of, and doing, a lot of the right things to facilitate your recovery, and we wish you the best.

Dan Silverman

Physical Exercise Helps With Chemo Brain

2010-08-10T19:02:00.000-07:00

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.

The brain is an amazing organ with the power to heal itself. You may have seen evidence of this in stroke victims who are able to regain many of their functions.

Confirming the benefits of exercise, there's a large study just out in the July issue of the Journal of the American Geriatrics Society that focuses on teenage physical activity. The authors conclude that exercise in the teen years reduces the risk of cognitive impairment as we age. They also look at what happens to women who are sedentary as teens and become physically active later in life (age groups 30 and 50). Those women show a significantly lowered risk of dementia as well. So if you're already exercising, good for you. If you're not, get out there, give me twenty and tone up that flabby brain.

Have you always exercised? If so, do you believe it kept the fog away (or helped lift it) during and after chemotherapy?

There's a good summary of the study in Science Daily at this link. You'll find the actual journal abstract here.

Sources:

Laura E. Middleton, Deborah E. Barnes, Li-Yung Lui, Kristine Yaffe. Physical Activity Over the Life Course and Its Association with Cognitive Performance and Impairment in Old Age. Journal of the American Geriatrics Society, June 2010 DOI: 10.1111/j.1532-5415.2010.02903.x

ScienceDaily (July 1, 2010). Teenage Physical Activity Reduces Risk of Cognitive Impairment in Later Life. http://www.sciencedaily.com/releases/2010/06/100630071139.htm

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

2010-08-06T10:21:00.000-07:00

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.
I am still very disconcerted about it because the moment of disability was totally unanticipated and so much greater in intensity than I thought I would experience at this point in time, so distant from actively having chemotherapy. It shocked me not so much because of embarrassment but because those few minutes of intense disability could happen anywhere anytime, in a place where I might be in real danger because of it.

In listening to the interview of you and Dr. Silverman, your episode of suddenly being lost in the shopping center which was so familiar to you, is the kind of vulnerability that I am afraid of. It is a moment of information overload when I am not capable of sorting or tracking or processing the minimum information about what is crucial just in order to be safe. I was in the process of buying a DVD of one of the films offered, with my wallet out, trying to make sense of what I was doing. It took me forever to get through trying to figure out how much cash to pay. I did manage to get the DVD and put my wallet away but my ability to do so was so marginal that I remain appalled. I wonder now if that is going to start happening more and more often. There is a history of possible Alzheimer's in my family.

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

2010-07-27T22:15:00.000-07:00

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.

I could not put the pieces of what I was seeing and hearing together. They didn't fit. I went looking for someone who could at least administer some type of standardized mental acuity testing for me prior to treatment and subsequent to treatment. The only person I could find who would do it was unable to do it until after my first treatment of 6 treatments, and it was not covered by my rather good health insurance. She wouldn't even take credit card payment so I had to dish out $250 in cash. I have the results of that initial testing to cherish as my feeble attempt at trying to make some kind of logical situation out of it all, when that actually was the responsibility of my health care providers -- my PCP and my oncologist -- but they took no interest in it.

After my third treatment, very early the following morning I was working quietly at my computer one minute and then the next my eyes were still open but everything was pitch black. I could feel a wave of cold fluid moving up the back of my head, starting at the base of the skull and rolling over the top of my head. I remained silent and blinded for about 2 to 3 minutes and then my vision returned. For several days after that my fingers were slow to receive commands from the brain in typing at the computer and would often tangle up.

I tend to be a person who does not freak out in circumstances like that. Yet as a chemophobic in general, I was very apprehensive about the remaining treatments. I mentioned it to my PCP (an excellent doc in most ways). He listened, but as a professional who is focused on getting a patient through treatment he did not respond to it and moved on to other concerns, as if it was not something to be concerned about. It never did happen again.

But I wonder what it represented physiologically, and I still think providers have an obligation to investigate more thoroughly a report such as that from a patient, or at least include it in the narrative documenting that patient's visit. No such note was made. A patient has no opportunity to insert that "on the record", and a patient who is dependent on the care of a PCP/coworker is reluctant to risk initiating conflict. On completion of treatment I was not retested with the same mental exam but the results would have been interesting. -- Lois

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

2010-07-23T14:54:00.000-07:00

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.

Since then (2003), I have been a wreck. My mind bounces from one thing to another. The major depression that I had battled in college returned and I did not want to live. I can't manage my house, children, or self. My husband has been in and out of work throughout this time and our finances are not good. I need to get a job but I don't have motivation, confidence or a lot of skills (been stay at home mom since I was 22). I graduated 3rd in my high school class, entered college with a full academic scholarship and had plans to return when the kids were old enough. Now I am 40 with hardly any work history and my attention span is like a preschooler's. My husband seems so disappointed in me. I let my friends down with my lack of follow through. My 17 year old son is bitter about the whole thing. He says I am just making excuses. I have been diagnosed with ADD and just started ritalin. Now in addition to HRT(est/prog/test), I take Effexor, Buproprion and Nexium. My last endoscopy showed long streaks of ulcers in my stomach.

Now for the good news... my doctors at Duke were wonderful during treatment. I am cancer free. I had sphincter saving surgery so ostomy was reversed. My depression has moderated though I still have suicidal thoughts from time to time.

My frustration has been going to the gyn. for the hormones, the oncologists for rechecks, the GI dr. for scopies and ulcer, and the psychiatrist for the ADD/depression. Our financial situation has kept me from just going to Duke for all of the above. Every time we almost get caught up with their bill, I have another CT or scopy. My husband doesn't think that the PSY has helped much or the medicines either. He works hard to keep us afloat. Even with insurance, the co pays for meds and visits are more than we can afford on his $35,000 a year salary.

I want to see a doctor who can integrate everything and help me have better quality of life. Do you know of one in central North Carolina? I live <40 miles from both Duke and UNC. Also, do you know of any grants, charities, research studies or programs that would pay for me to have the best treatment without worrying about the cost? I will go anywhere that I could be helped. Sometimes I want to apply for disability. I believe that I have something to offer to hurting people. I have so many ideas of ways to help cancer and mental health patients. When I am face to face with people, I can focus, listen, love them. I know that most jobs require a level of executive function. I am not very productive here at home, so I am afraid it will be the same way in a job.

I am enjoying your book. Thanks for the invitation to write to you.

-- Connie, NC

Her Brain After Treatment for Hepatitis C [From Dale]

2010-06-26T21:52:00.000-07:00

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.

Dale Miller

Sebastopol, CA

Speaking to a Crowd of 300 on National Cancer Survivors Day

2010-06-14T19:35:00.000-07:00

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"

2010-06-04T15:29:00.000-07:00

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.

I think in my case it was the Adria/Cytox that just about did me in. I had the most tremendous brain fog and could not trust myself to remember anything unless I wrote it down and that was the most helpful tool for me.

I have found out since my chemo that keeping your blood count high helps to "lessen" the effect of the chemo on the brain. We must ask our oncologists to do everything possible to keep our white and red blood counts in good order. After my 3rd Adria/Cytox I had an absolute white count of 39 ; not 390, not 3900--just 39 measly little white cells and also significant anemia on top of it.

I could not make my brain work and I felt like I had lost myself ( I love that phrase too and I have said exactly the very same words). At that point I refused my 4th Adria/Cytox and offered to take 5 Taxol treatments to have a complete 8 rounds of some kind of poison to kill the f-ing cancer that was trying to kill me.

But the main reason I am writing to you is to tell you that each and everyone who has to have chemo should and must have a Ke-mo sah-bee (you know the story -- and we have altered the spelling: "Chemo-sah-bee") by their side. Otherwise you are totally depriving someone close to you of the honor and the power it gives that person to be your Chemo-sah-bee; this way they can fight beside you and believe me it is a gift for that "friend."

The husband of a close friend with breast cancer came up with that name 20 years ago and it became a tradition in our breast cancer support group at that time. I work in the medical profession and I have encouraged the custom for those 20 years and when I had my second dance with the evil one, my husband would not have allowed anyone else to be my Chemo-sah-bee.

With my first breast cancer I had a lumpectomy and radiation, but the second time I also had a very high HER2-neu marker and chemo became necessary. I have to say I was much luckier with my radiation experience -- twice I had the very best and it was a walk in the park. Sorry you weren't so lucky with your intro to the "glow in the dark "special therapy. During my first radiation therapy I got them to completely remodel the department in a very cheerful and beautiful way (I had the advantage of having worked with most of the staff). I simply told them that while I was getting the worst "burn" of my life, I needed the place to at least look like a beach and they listened to me .

I do want to say that I don't feel like I have been through any more tough stuff than anyone else in "our club." We all have to do whatever it takes and might as well have a good attitude; it's a lot more fun that way.

One thing that helped me were audio books. I have always loved storytelling and I love a good voice telling a good story and I could concentrate on short segments of a story and it was pure pleasure . So that might be a tip for patients on chemo. It saved my sanity and allowed my brain to go to a wonderful place and take a break...

I can't wait to read the rest of the book - it hits on a very important and delicate subject and I appreciate it very much.

Always,

Gudrun Durmon, age 55

Lake City, Colorado (I like a Rocky Mountain high)

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

2010-05-19T21:52:00.000-07:00

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."

The Study
42 patients, all scheduled to undergo a chemotherapy regimen of 5-fluorouracil (5-FU), Adriamycin, and cyclophosphamide (FAC), with or without paclitaxel.

FIRST EVALUATION
All went through a baseline evaluation prior to beginning chemo. This included a battery of tests that looked at cognition, mood, and quality of life.

Results: 21% (9 of 42 women) showed cognitive dysfunction on measures of processing speed, executive function, learning and memory.

SECOND EVALUATION
Patients were given a similar battery of tests during chemo or shortly after completion.

Results: 24 of 37 women (65%) - note, some participants dropped out - demonstrated an acute decline in cognitive functioning

THIRD EVALUATION
A similar battery of tests 1 year or several months after completing chemo.

Results: 17 of the 28 patients who returned for the late evaluation (61%) showed cognitive decline at end of treatment. The cognitive areas most commonly affected were learning, memory, executive function and processing speed.

Within this group:
12 of those 17 patients (71%) showed a continuous decline since their second evaluation. 5 of those 17 patients (29%) showed a new onset cognitive decline that was not present at their second evaluation.

Previous research from these authors showed that women receiving FAC regimens to treat breast cancer experienced cognitive decline that often did not improve in the year following treatment. But what's so significant about this study is that they also found a "progressive and delayed cognitive decline that does not appear to be attributable to other interventions."

In other words, you may feel clear headed during treatment only to experience "chemo brain" months later. And at least in this study, the fog could get worse after treatment. Not a happy thought.

*Jeffrey S. Wefel, PhD, et al., "Acute and late onset cognitive dysfunction associated with chemotherapy in women with breast cancer," journal Cancer, 28 Apr 2010.

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

2010-04-16T15:34:00.000-07:00

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

2010-03-25T14:31:00.000-07:00

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)

2010-03-19T14:50:00.000-07:00

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
and I credit the experience along with the kind and gentle support from Donna, Nancy, Debbie, Lesley, Chris and all the wonderful staff, with helping me face my fears and move on with my life.

This is from the Healing Odyssey website:

Escape the pressures of daily living for a lively weekend in the serenity and beauty of the Santa Barbara mountains. Replenish your spirit and refresh your mind exploring new ideas and activities. Meet women who will understand and validate your feelings. Find a community of support and begin new friendships that can continue back home. Discover you are not alone on your journey.

To learn more, click here.

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

2010-03-08T15:21:00.000-08:00

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.

It wasn't until some weeks later that the head nurse from the clinic mentioned it. She said they were now training their nurses to discuss chemo brain -- what it is and what it does. By then I had finally heard about this side effect during my hour-long leukemia and lymphoma telephone support group.

I went through the standard 6 months of treatment starting in March of 2009 for chronic lymphocytic leukemia. I had very few side effects from the three drugs I was given, other than for the monthly nausea and, most noticeable for me, the monthly mental fog which I now know was, and is, chemo brain.

I didn't have really strong symptoms of chemo brain but I had short term memory loss, somewhat mild motor skill problems, and for me perhaps the worst was the loss of mental focus. My clinic had mentioned many possible side effects of the chemo drugs I was given, but the mental fog of chemo brain was not one of them.

I noticed the various mental problems right after the first treatment and these side effects continued throughout the 6 months of treatment and beyond. Many of the symptoms have lessened some over the past months, since I have done things such as working word games and puzzles, reading, and working on my lace knitting, all of which take concentration. I also became involved in a folk painting class for cancer survivors.

Interestingly enough, at the end of chemo treatments, one of the more noticeable effects I had at that time was that I couldn't hold my hands steady, to read, to knit, or as it turned out, to paint. We were working on painting fairly small papier-mâché boxes and I had to use somewhat small brushes and practice a lot so that my brush strokes didn't look so shaky. I took my painting supplies home and practiced often daily in between the weekly classes.

In the last couple of months, I have noticed that my brush strokes now show good control and that my hands no longer shake as they did before. I would guess that all that practice of brush strokes helped me to reestablish some brain muscle connections over those months. I realize that these side effects do lessen with time, but surely this kind of exercise can only help to make the brain work again as it should.

Thanks.

Bruce Lantry

Rural Nebraska

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

2010-01-29T21:21:00.000-08:00

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]

2010-01-25T14:39:00.000-08:00

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.
I never knew why I did so much alone until much later when I realized I did not want people to identify me with being sick. That person was not me. I loved your statement that Cancer didn't define me, but it defined my relationships. That was my life. I have since banned people from saying "You are strong.... ", and "God doesn't give you anything you can't handle." So what happens if you're a weak person? Those statements always pissed me off. People really have no idea.

Anyway, the emotional aspects were tough enough. Absolutely no part of my life prepared me for sitting in a group chemo room at age 38 poisoning my body. I remember walking around that first day thinking - do I look different? What would people say if I told them I just had four hours of chemo? The surprising part to me is that I was at the hospital daily or weekly for one entire year, and no doctor or nurse ever warned me about cognitive issues.

Then the never ending radiation was tough - that machine was so sterile and scary. AND I had to bring my kids with me everyday for treatment as it was summer. My daughters had just turned 5 and 6 and would sit outside with the nurses talking to me on the microphone watching me on the monitor. Can't wait to ask them later in life what affect that had on them.

During that year of surgery, chemo, radiation I continued to work out 3 and 4 times a week. I was determined to treat my body well, take control where I could. Amazingly, it all crashed after the treatments for never ending months. I never understood what happened until I read your book. Until then I had never been depressed, and because I had major life crises simultaneous with cancer I had assumed my fog and depression were just the stress of everything else on my plate - financial, unemployment, divorce, cancer.... with no family in town.

I was forgetful, would have to really focus to keep myself on task. Mid-sentence, I would either forget a word, get stuck on a word, or simply stop talking because I could not remember what I was saying.

Nine months post-chemo I went on a trip with girlfriends and could barely focus on a conversation or events. I dreaded going because I knew I was not myself. Then at night I would cry ALOT which was very unlike me. The post-chemo was far worse than actual chemo for me. It all just hit me and never left. I was going on job interviews, talking to recruiters because I had to, but looking back I was messed up.

I am two years from diagnosis this month and I finally feel like myself. I would say the fog has lifted 90%. The tamoxifen seems to have no effect on anything for me, thankfully.

The most telling part of my chemo fog, is when reading your book how long it took me to remember where I put my paperwork so I knew what chemo drugs I took (cytoxan and docetaxel)!

So very long story for why I am so grateful for your book. Validation is always so helpful. Doctor pre-warnings may have been nicer, but... I am alive and that is the most important part. And... I would probably go through it all again to avoid the radioactive multiple nipple injections with no pain meds. With all our modern medicine, just who thinks strapping a person to a table with needles is humane?

Keep writing and researching,

Susan

Stanford Imaging Study & Brain Abnormalities in Chemo Patients

2010-01-18T15:04:00.000-08:00

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)

2010-01-12T23:51:00.000-08:00

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.

Yesterday, I had to admit to myself that things weren't altogether copacetic. It took me over three hours to make dinner. You may wonder what the one thing has to do with the other and what amazing concoction I was attempting. Quiche and sweet potato soup. Eggs and soup. Three hours of activity, none of which was passive.

Chemo brain is something that I've been struggling with for months now. People may smile and joke and say things like, "Blame it on the chemo brain," or "I must have chemo brain by proxy." I can't even smile about it anymore.

It took me three hours to break eggs, peel vegetables, and get things into the oven. When I discussed the situation with my husband, Chris, he did his best to reassure me that I'm still the same person I've always been and that I shouldn't be so hard on myself. This is one of the million reasons I love my guy. He was worried that I was beating myself up for not being able to do things that were once second nature.

Trust me, I know I'm still the same Ann. All of my inherent Ann-ness is intact. My personality hasn't really shifted. It's my ability to think that has me confounded.

We've had the chemo brain discussion more than once and I ultimately had to use the one phrase that makes me insane with irritation to end the confusion: You can't understand. I hate this phrase. For me, hearing this leads me to think that a person is copping out of a debate or that I'm failing to adequately explain something.

Imagine walking around in a gelatinous fog 24/7. Now multiply that by 100. I feel like my head is filled with cotton batting. I can't process long tracts of text in a single sitting. It takes me ages to read a single magazine article and I don't always understand what I've read. When I'm trying to hold a conversation, it's not unusual for me to just stop talking mid-sentence without having finished the thought. I substitute words that mean one thing, but sound similar to another. I don't mean homophones, either. Yesterday, I said Scot, when I meant to say stop. I heard stop in my head. I'd intended to say stop. I said Scot instead. Things like that happen with great frequency on a daily basis.

Chris and close friends that I speak to regularly anticipate it happening. They let it pass without comment, which I greatly appreciate. I usually keep my cool and correct myself, or at least slow down long enough to make fewer mistakes.

I can plan things out and make lists to help me keep on track. For instance, I planned dinner yesterday. I had all of my bowls lined up, the spices were all measured, and all of the vegetables I would need were on the counter within easy reach and the utensils were at their stations. It does take me a little longer than most people to get things done because I don't move as quickly as I once did. Every action requires thought. That's not why it took me 3 hours to make a quiche and a pot of soup. It should have taken me an hour, tops.

It took 3 hours because I was trying to multi-task. Rather than cook a quiche, then make soup, I was trying to do both at once so they'd be ready at the same time. It doesn't sound complicated and I'm sure there are some of you who are wondering why I'm droning on at length about it. It's because it's not complicated and therein lies my frustration.

This was the final straw in a long line of similar events. I can no longer do things in a linear progression. What makes perfect sense one minute becomes a complete quagmire the next. I'm not alone in this. I've spoken to other patients who've related similar anecdotes. Mention chemo brain and we all sport similar looks of resigned understanding.

This makes me very worried regarding taking classes at LSU in order to finish the CM degree. I refuse to let it deter me, but I don't know how to make it stop frustrating me. I accept the fact that I need to learn a new way to learn and that things will no longer come easily to me. I just don't like it.

Tomorrow, I'll contact Karen, about setting me up with the neuropsychologists. I may be able to get in to see them during my next checkup in three months. Until then, I'll keep cruising along.

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

2010-01-02T17:11:00.000-08:00

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!!

Why am I fawning like this? Because several of their researchers have made little cracks in the case of chemotherapy-related cognitive impairment, also known as chemo brain, chemonesia, brain fog, post-chemo brain, and my hands-down personal favorite: Memory? What memory! That's a big issue to those of us who suffered through it (and to those of us who write books about it).

In 2006, Mark Noble, Ph.D., director of the University of Rochester Stem Cell and Regenerative Medicine Institute, and his team, were among the first scientists to directly link chemotherapy to brain cell death in humans and rodents. They found that three drugs used to treat cancer (carmustine, cisplatin, and cytarabine) were more toxic to healthy brain cells than to cancer cells.

For me, at the time, reading about this study in major newspapers amounted to an "aha!" moment.

Then two years later, Noble et. al. exposed mice and cell lines to the common chemo drug 5-fluorouracil or 5-FU. They found that 5-FU damaged healthy immature cells in the central nervous system and also destroyed cells called oligodendrocytes. Our brains rely on the fatty coating produced by oligodendrocytes to function normally. Without it, our nerve cells can't fire off signals to each other. You might look at an apple and think it's a baseball. Who would want that?

And now there are more findings from this small private university which boasts eight Nobel Prize winners among its faculty and alumni. Again using animal models, Robert Gross, MD, PhD and Michelle Janelsins, PhD and their team reported that chemo drugs cyclophosphamide, 5-FU, paclitaxel and doxorubicin disrupt the birth of new brain cells. But potentially insulin-like growth factor (IGF-1), a protein that is generally secreted by the liver, may help reverse the damage. At least it seems so in mice. For us humans, we'll have to stay tuned.

The researchers speculated that chemotherapy might destroy the ability of our brain cells to regenerate in the hippocampus. That's the region of the brain responsible for forming new memories. If you're able to remember appointments without writing them down and recognize your new co-worker, then thank your hippocampus.

This study, states a UR press release, "is relevant to the legions of cancer survivors who experience a frustrating decline in cognitive function after chemotherapy treatment, known as chemo brain." The scientists deserve kudos for their good work. But they're not alone in their efforts. Others at institutions like UCLA, USC, Sloan-Kettering, MD Anderson, University of Chicago, the Mayo Clinic, University of Michigan, Dana-Farber, Stanford, Dartmouth, Eastern Maine Medical Center, University of Toronto, and at research centers in the U.K., Japan, The Netherlands and elsewhere are advancing the research as well. The data is coming out faster and more furiously now. One day, hopefully, cancer patients will need not sacrifice their minds to regain their health. When that happens you won't hear me say, "aha." Perhaps I'll shout, "amen!"

A Spouse With Brain Fog (From Michelle)

2009-11-30T23:42:00.000-08:00

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?

My husband is a Hodgkins survivor of almost three years. Chemo brain is a reality at our house. It is a challenge to be on the receiving end of the fog but it also isn't fair to blame the patient/survivor either. It would be like blaming someone with dementia for their confusion. At the same time, it is tough to be loving and patient while repeating the answer to a question 15 times and still not have him remember that we have discussed it. I also swear my husband is on a loop...he just repeats himself constantly. We try to keep it lighthearted and I joke that if he hears himself say "Like I said...," then he should just stop but there is a point at which it is no longer funny.

I have to say that, at some point, I began to wonder if it was contagious. I began to think I was losing my mind too. I'm sure spouses/caregivers/family experience a level of fatigue and stress that begin to impact our own memory, which begs the question, Where does fatigue fit into all of this for cancer patients?

Thanks so much for bringing attention to this important situation! And thank you in advance for any thoughts in response to these questions.

Are Memories Ever Really Lost?

2009-11-23T23:16:00.000-08:00

by
Idelle Davidson

That's what a research team at the Massachusetts Institute of Technology wanted to know. And so to begin, they genetically engineered some mice to develop Alzheimer's disease-like symptoms. The mice quickly forgot what had taken them several weeks to learn (one task was navigating a water maze).

The next phase involved sensory stimulation. Would it make a

difference in memory retrieval? To find out, the researchers housed some of the rodents for a few more weeks in the equivalent of a Club Med for mice: a cage with a treadmill, climbing devices, tunnels and lots of colorful toys. Other genetically altered mice lived in traditional cages without the goodies.

What they observed was that the stimulated mice recovered their memories. The other mice did not.

Later, the scientists examined the brains of the enriched mice and found a surprise: New neurons had not replaced those that were destroyed. Rather, remaining neurons had compensated for those that were lost. In other words, even though specific brain cells were gone forever, their memories were still there.

Li-Huei Tsai, Ph.D. headed the team and concluded, "This recovery of long-term memory was really the most remarkable finding. It suggests that memories are not really erased in such disorders as Alzheimer's, but that they are rendered inaccessible and can be recovered."

And if memories can be recovered in Alzheimer's disease-like mice after enrichment, imagine what that might mean for people who are more mildly impaired after cancer therapies. The implications are stunning and profoundly hopeful.

Did you experience problems with your memory after chemo? Have you been able to retrieve what you thought was lost forever? If so, did enriching activities help? What worked for you?

Can't Find Your Words? Say: "Chemo Brain!"

2009-11-05T21:22:00.000-08:00

By Idelle Davidson

You know it's just 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.

Have you experienced word retrieval problems during or following chemotherapy? Have you found ways to compensate? If so, what works for you?

Driving, Spatial Orientation (From JBF)

2009-11-01T19:00:00.000-08:00

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!!!

I prefer to back into parking spots - it was almost impossible for me to do while on chemo. Figuring out where the cars (and other obstacles) were was terrible. I am not sure how to describe it - it is like my brain kept flipping the things I was looking at.

I study T'ai Chi. Prior to surgery and chemo I was learning a form and practicing regularly. After surgery, but prior to chemo I practiced Tai Chi - it felt good and helped open up my chest. During chemo I found it challenging - but still practiced. The challenge... recognizing my body and its position in space. After chemo, when I joined class again I was very frustrated. I could not translate what I saw the teacher doing to the movement I needed to do.

3. Organization & Decision Making: I am usually very organized and can make a plan, layout the data and make a decision based on that. I could NOT do this while on chemo. I planned a simple conversion and needed to buy a cabinet as part of the plan. I had the numbers for three cabinets all laid out in front of me... and I could not figure out what to do. I finally gave up. And this was a simple plan, but it took me almost a month to come up with... Normally this type of plan would have taken an hour at the most.

4. Alzheimer's-like symptoms: A friend's husband has developed Alzheimer's. I went to the National Alzheimer's website to learn more. I took their little quiz - I felt like I was the "poster child" for it!

5. Dyslexia: I am dyslexic. This became extremely exacerbated during treatment. I have developed many coping skills during my life to deal with this challenge... lets just say, "this was a train wreck" while on chemo.
Is it chemo or is it menopause? I wonder... Hard to know and to say for sure. And let's throw in stress for good measure! Oh yes, and a history of depression. Fortunately that was well under control for this life experience.

As the chemo moves out the problems are clearing up. I am painfully aware that this process is going to take longer than I had imagined! I am thankful for all the little improvements. I try to not focus on it, after all, "what you focus on expands..." but chemo brain is there, and for me, that is a fact.

Again, thanks for your book!

JBF, Pittsburgh, PA
Lung Cancer Survivor

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

2009-10-10T12:15:00.000-07:00

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.
But when I was 20 years old, a sophomore at 'nova, I contracted a horrible throat infection. 3 rounds of antibiotics later and I still felt like crap. I had fatigue like no other. Horribly itchy legs (without a rash) for almost a year ... and a huge lump poking out from just beneath my collar bone - "sub-clavicular."

My primary ran a batter of tests and assured me I was young and healthy. He did refer me to an otorhinolaryngologist, who ran some of his own tests and determined it was just an abnormally large lymph node that was a remnant of that horrible throat infection. He said the sinus of the node had stretched out and it would take time for it to go back into place. I was too young for cancer. My blood tests came back perfect, and surely if it was cancer, especially a lymphoma, my blood would be abnormal. That's what they told me. The ENT told me I was young, and healthy, and he didn't want to scar me for a little lymph node. He told me to come back in a few months and he'd take it out if it was still enlarged.

I waited about a month before I decided to take matters into my own hands. I called the ENT and told him to schedule the biopsy, I couldn't live with this lump and it just didn't feel right. He called me 2 days after the surgery. He was in shock and told me it was Hodgkin's Lymphoma. He kept apologizing over and over but I couldn't even hear him anymore. I received 6 rounds of chemo. I still wasn't in remission yet and had to have 5 weeks of radiation.

This was 7 years ago. I'm healthy, relatively ... I just found out my thyroid is underactive, due to the radiation. I have to have breast MRIs and skin checks, to screen for breast cancer and melanoma, after the radiation. I gave birth last summer, nothing short of miraculous. My son was premature and underweight but otherwise healthy. He is my joy and my purpose.

But I never REALLY recovered from the cancer. I developed PTSD which went untreated. I sought several therapists and they either dismissed me, or believed me, but threw anti-anxiety meds at me.

Worst of all - my brain. I can't focus long enough to read a magazine article, let alone a book. The best way I can describe it is that things just "fall out of my head" - words, thoughts, entire sentences. I have been known to stop mid-sentence and have no recollection of what the conversation was about. I've walked out of stores and can't remember where I parked my car. I've sat in my car in my driveway or a parking lot and have absolutely no idea how I got there - I can't recall driving there or the route I took, nothing. I can't parallel park anymore either!

Visually and mentally, it's also "foggy" in that I always feel like I'm viewing the world from under water. Like I'm several feet deep in a pond and everyone else is on the other side, "through the looking glass." The "water" distorts my vision, my hearing, my perception, my understanding. It slows the messages and visual cues, it mutes them.

My career has suffered. My personal life has suffered ... my confidence and self-esteem have taken such horrible blows.

My oncologist is an angel and recognizes chemobrain. She's done her own studies, based on me in fact. I was "highly-functioning" (her term). I was her youngest patient. She prescribed Provigil. It was good for the first few weeks, so I went on and off of it again for years, and finally off of it when I was pregnant. I started taking it again a few months ago and talked to my doctor about it not being as effective as I'd like. She increased the dose from 100 mg to 200 mg and WHAT A DIFFERENCE! I felt like a new person. For the first time in almost a decade, I felt like "myself" again - a woman I didn't even recognize anymore. I felt like I had my "edge" back!

But then I started a new job (a company that specializes in radiation oncology shielding, ironically enough) and this new insurance doesn't cover Provigil. I can't afford to pay for it out of pocket. We're appealing the decision, my doctor and I, but there's no guarantee. We're considering Ritalin, but she is weary of it because of the potential cardiac issues, and I had been on Adriamycin, which is known to cause heart problems in the long-term.

The person I was died with that first chemo infusion. Maybe even with the biopsy. My brain no longer defines me - cancer does. I want to fight for more awareness. I want to fight for more research. I want to fight for FDA approval for drugs like Provigil, so that insurance companies can't take the easy way out anymore. So many people have said they'd still choose chemo even if they knew about chemobrain. I'm not so sure. Yes, now, if I relapse, I would take the chemo for my son's sake. But if I had a crystal ball, I don't know if I would have chosen chemo. Especially now without the Provigil, and having been there to know how good it could be again.

All the best,
Kelly

I Appreciate Your Book (From Lori, Esq.)

2009-10-07T15:24:00.000-07:00

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.
Getting off tamoxifen helped with the bloating/sweating issues, although has left me with chronic yeast infections. Far more frightening however, is the mental confusion, forgetfulness and feeling so "disassociated" from myself. Being told by doctors it was "all in my head" made it worse, I was convinced I had early Alzheimer's or a brain tumor. It got so bad several months ago, that when I could not remember my way out of the sports store, and knowing I had to then pick up and drive my kids, I went into a full panic attack.

I went to the emergency room at Cedars Hospital in Los Angeles, certain that there was something very, very, wrong with my mind. After a brain scan and a check of the arteries to ensure I hadn't had a stroke, I was released. The neurologist dismissed it as a panic attack and gave me xanax to carry in my purse. When I asked how come I never panicked when I was a successful, multi-tasking professional, wife and mom, he said I must be stressed and older, and that was it. The idea that my chemo from 2 years ago could have any bearing on my mental state was never suggested by my doctors or something I considered.

When I picked up your book yesterday, and started to read about other chemo survivors even years later feeling disoriented, confused, not like themselves, forgetful, and then panicky as a result thereof, I can't tell you how relieved I was. I'm not nuts, or if I am, at least I now know why. I am buying copies of your book and sending it to my gynecologist, oncologist and neurologist so they will perhaps have a better understanding of, and empathy for, their patients with these symptoms. As you said, I would still opt to have the chemo, but I wish I would have known that "chemo brain" could happen, and that it's not just me. I will follow your suggestions, I will hope for a better attitude and better mental acuity, but just knowing I am not alone has been so comforting.

Thank you again.

Lori, Esq., Los Angeles

Questions About Memory? Ask Dr. Silverman

2009-09-29T20:49:00.000-07:00

Dan Silverman answered readers' questions in the New York Times Consults Blog on August 6-11, 2009. The questions are paraphrased here.

#1 Question from Bob H:
In 2002 I was diagnosed with squamous tonsillar cancer. I went through a neck dissection with 41 lymph nodes removed. I also had radiation treatments and chemo (cisplatin). I haven't been the same since. I have trouble gathering my thoughts and recalling information. Organization is also hard for me. Neuropsychological testing showed my memory is severely impaired. What treatment would you suggest? I am 54 years old. Thank you.

Dr. Silverman responds:
Bob, your experience of never feeling "quite the same" after treatment for cancer- particularly with respect to organizing your thoughts ("executive function") and memory is, unfortunately, not uncommon. The treatment plan that would be most appropriate for you would have to be guided by more of the specifics of your individual medical history and current problems than is possible to examine in this kind of blog forum.

Generally speaking, though, there are numerous tools available to optimize your cognitive function after undergoing therapy for cancer. These include:

1. Employing strategies to fully synchronize your body's biorhythms with your sleep-wake cycle. As we emphasize in the "Nine Daily Steps" program and in the "Sleeping through Insomnia" chapters in our book, the main issue concerning sleep is not about getting "enough" of it, but of getting the right kinds of it, and especially of using your sleep-wake cycle as a tool for manipulating the biorhythm pattern maintained by your brain.

2. Food (and drink) that essentially bathes your brain in amino acids and co-factors for key enzymes used in synthesizing neurotransmitters, fuel sources for recharging your brain's "batteries" (electrochemical gradients maintained by the cells of our nervous system), and natural antioxidant and anti-inflammatory compounds to protect your brain from accumulating new damage. In other words, food and drinks should not be just "nutritious," but specifically directed to benefiting brain function.

That's why, for example, we recommend drinking coffee (not a food people generally put on their "nutritious" list) and some other stimulant beverages, and why we provide specific guidance on how to choose among the wide range of "nutritious" foods that people could possibly consume, as well as dispel some myths about certain foods being "bad" for you, particularly when the central goal is to improve your cognitive abilities.

3. Building neuropathways that reinforce and develop healthy mental, emotional, and social functioning;

4. Judicious use of specific prescribed drugs to further enhance cognitive function; and

5. Addressing symptoms like anxiety and depression that can exacerbate cognitive problems and lead to "vicious cycles" that impair cognition and deplete energy from your brain (and the rest of your body). The depleted energy plus impaired cognition, in turn, deepens symptoms of depression and leads to more anxiety, etc.

Techniques for accomplishing each of these objectives are detailed in our book, "Your Brain After Chemo," which also contains an appendix that will point you to many additional helpful resources.
-----------------------

#2 Question from Dionne
Can people experience chemo brain during chemo or does it happen only when treatment is complete? My sister is in treatment now and having problems. Many Thanks.

Dr. Silverman responds:
Dionne, it is common for people to begin to experience cognitive symptoms while still undergoing chemotherapy, as your sister has begun to do ... some of them have completely recovered, some have partially recovered, and some have suffered persistent impairment of their cognitive abilities for a long time (10 years or more).

As those symptoms can comprise the single biggest impediment to regaining one's quality of life even after there is complete recovery from the cancer itself, your sister stands to benefit from being well-informed on how to use all the available tools of our present knowledge (however limited they, and our present knowledge, may be) to prevent whatever symptoms can be prevented, and to accelerate her recovery from whatever symptoms that may have already developed.
---------------------

#3 Question from Catherine
Prior to treatment I had a very high functioning position with lots of responsibility. Then came chemotherapy and stereostatic radiosurgery and now I can't remember phone conversations two seconds after I hang up the phone. Would appreciate your comments.

Dr. Silverman responds:
Thanks for sharing your experience, Catherine. It typically has been the people who are highest functioning to begin with, and who have the highest level of professional responsibilities, who suffer the most from cognition-altering syndromes after therapy for cancer. Fortunately, the same intellectual gifts and inner resources that allowed you to be high-functioning before therapy, which are currently buried under a layer of "chemo-dust" (the after-effects of the corrosive power that chemotherapy has exerted against your cancer but, unavoidably, against some of your body's normal tissues as well), can also serve as your ally in aiding your recovery from those symptoms once you begin to clear the dust ... a process that may be accelerated by some of the methods mentioned in Your Brain After Chemo.
-------------------------------

#4 Question from Dennis
Ten years ago I went through 80 weeks of interferon three times a week along with 1200mg of ribavirin to treat hepatitis C. Before the drugs books stuck with me and years later I could quote them back. Now I can't remember what I read and learning is a slow process. I also can't remember why I walked into a room or what it was I was trying to find. Doctors have told me that my experiences are not related to chemo and even if they were I would have been back to my old self by now. I would be in a complete fog, walking around in circles if it weren't for sticky notes.

Dr. Silverman responds:
Dennis, see my response to E. Culli, below. I address the same concerns there.
-----------

#5 Question from E. Culli
Prior to being treated with interferon and ribavirin I was a courier in the St. Louis area and now I have lost my sense of direction. In fact last month I got lost on the way to my doctor's office in Lexington, KY and went into a panic attack because I got so turned around and I couldn't figure out the map. I was two hours late. Reading is also a major problem. If I put the book down before I'm done, I have to back up a couple of pages to try to remember the story. Three months later I can read the same book and not remember how it ends. Looking on the bright side, I guess I can save money on books because they're always new to me. What do I do about my memory?

Dr. Silverman responds:
Both you and Dennis (see question #4 above) experienced cognitive deterioration after undergoing ribavirin therapy. Just like certain drugs that are commonly used as chemotherapy agents in the treatment of cancer, ribavirin is a "nucleoside analog" - a class of drugs resembling nucleic acids, which interfere with synthesis of DNA or RNA, or both. And just like many chemotherapy agents, ribavirin can cause side effects like gastrointestinal distress, anemia, hair loss, weight loss, fatigue, mutations leading to birth defects and generalized discomfort. Use of the drug in patients undergoing treatment for viral infections has also been associated with depression, insomnia and impairment of memory and concentration.

Though doctors may say to either of you that what you went through "was not chemo," your brain may feel that's a "distinction without a difference." And for doctors to say that "even if it were you would have recovered by now," requires them to ignore the many other people who are also 10 years out (or longer) from their last dose of cancer therapies but who continue to have problems with memory, concentration and other cognitive abilities.

The bottom line is this: though it is not uncommon, unfortunately, for the kinds of symptoms you have experienced to be trivialized or brushed aside by some doctors - whether occurring after chemotherapy for cancer, or after ribavirin+interferon therapy for hepatitis C - it doesn't mean that your symptoms are not entirely real, and it doesn't mean that they are not related to the therapy you received.

It may mean that you need to talk to a different doctor, one who will take your symptoms seriously and steer you towards therapeutic approaches aimed at achieving your recovery from them. In the meantime, as a head-start in addressing the issue, "how do I get my memory back?" please see my response to Bob H.'s comment (#1), above.
--------------

#6 Question from Brian of Calgary, Alberta, Canada
Wouldn't problems with concentration, setting priorities, word retrieval, multitasking, and following instructions, etc. be signs of brain injury? What do neurologists and neuropsychologists say about this?

Dr. Silverman responds:
Yes, there are certainly similarities to symptoms suffered by patients with brain injury, which likely reflects that a variety of different mechanisms can lead to diminished function of the same areas of the brain. (Our own research collaborative groups include five neuropsychologists who specialize in cancer-related cognitive dysfunction or in assessing and treating various forms of mild cognitive impairment, and we are also in close contact with neurologists and neurosurgeons, some of whom collaborate with us specifically on the study of brain injury, and others with whom we collaborate in the field of neuroimaging assessment of mild decline in cognition.)
----------------

Question#7 from Sara of New York, NY
My father beat tonsil cancer five years ago after going through surgery and extensive chemotherapy and radiation treatments. I've noticed since that he developed problems completing sentences, concentrating and multitasking. And now he has been diagnosed with small cell carcinoma in his left lung and he is in the end stage of his life. I would like him to be able to communicate his last wishes but because of his problems articulating, it has been difficult for him. How can we help him? Would holding his hand instead of trying to get him to speak be an effective strategy as it might help him process information and put him at ease?

Dr. Silverman responds:
Sara, your father's unfortunate condition is quite complicated - both from an oncology standpoint (two different cancers; treatments by surgery, radiation and chemotherapy; presence of late-stage disease and its complications) and also from a neuropsychologic standpoint (multiple years of decline; multiple areas of cognition affected), much of which may have little to do with his cancer and its treatments.

Without a lot more details, it is difficult to know in which of several possible directions to guide you - for example, whether he would benefit from speech therapy, treatment with medicines used to treat dementia symptoms, professionals from the hospice community, working with communication specialists like those who help stroke victims who have permanently lost their ability to speak, etc.

If your father has not had a recent assessment by a neurologist, who could gather and integrate all the pertinent information pertaining to his current situation and then make appropriate referrals, that would be a good place to start. And certainly, establishing an intimate connection by such things as holding his hand could be beneficial for him and for you. (If he happens to be immunosuppressed, just remember to wash your own hands before and after.)

Your Brain After Chemo

Chemo Brain Program, Feb. 21, W. Los Angeles, 7-9 pm

How to Use This Blog

What’s Another Name for Chemo Brain?

SOMETIMES ALL YOU CAN DO IS LAUGH

What the Vitamins in Your Blood Tell You About Your Brain

Another Study: Changes in Cerebral White Matter After Chemo

Cancer Itself May Contribute to Brain Fog. Chemo Makes It Worse, Says a Stanford Study

My Friend, Joyce Parker, Passed Away

Another Resource: An E-Book on Chemotherapy

How to Advocate for Your Chemo Brain Care

Learning Ukulele Has Helped My Memory

Chemo Brain May Last 5 Years or Longer After Stem Cell Transplant

Ten Years After Treatment & Still Struggling With Performance Anxiety & Depression

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

New Book From Breast Cancer Sisterhood

Her Employer Let Her Go After Cognitive Problems at Work

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

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

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

Testing for "Chemo Brain" as a Disability

Cognitive Changes After Treatment

A Misleading Headline About Chemo Brain?

A Book for Young Adults With Cancer

Is "Chemo Brain" a Disability Under the Americans With Disabilities Act (ADA)?

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

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

Related articles by Zemanta

5 Ways to Self-Empower Even the Foggiest Recovery

Hypogonadism (Decreased Hormones) in Male Lymphoma Patients After Chemo

Stand Up 2 Cancer AND "Chemo Brain"

How Do You Learn?

A Note From Bobbi

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

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

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

Hear My Interview on Empower Radio

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

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

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

Questions About Memory Loss From a Hodgkin's Lymphoma Patient

Physical Exercise Helps With Chemo Brain

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

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

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

Her Brain After Treatment for Hepatitis C [From Dale]

Speaking to a Crowd of 300 on National Cancer Survivors Day

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

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

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

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

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

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

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

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

Stanford Imaging Study & Brain Abnormalities in Chemo Patients

A Fog That's Relentless (From Ann Gregory)

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

A Spouse With Brain Fog (From Michelle)

Are Memories Ever Really Lost?

Can't Find Your Words? Say: "Chemo Brain!"

Driving, Spatial Orientation (From JBF)

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

I Appreciate Your Book (From Lori, Esq.)

Questions About Memory? Ask Dr. Silverman