cancer brain / chemo brain/ stress brain/ losing words and getting lost?

Recently attended a lecture at Wellness Community of Philadelphia about research into what's called "Chemo Brain"--should more rightly be called "Cancer Brain" (chemo doesn't matter), or even "Stress Trauma Brain."

Her research is showing that:

1. It is real---causes physiologic and neurologic brain effects. Can affect one's ability to remember (current short term), to lose words (and perhaps even sub stitute inappropriate words for the "lost" word--usually nouns); to perform "Executive Functions"--e.g., organization, multi-tasking (I can't do it anymore); synthesizing, focus, etc.

2. (Here's evidence--I totally forgot to add a #2--and I used to teach research report writing--had to go back and add it):

3. For some Chemo Brain is debilitating, for others, just annoying (e.g., yesteday I poured ice tea insteafd of milk over my husband's cereal. Since it's the only thing I do for him all day, I just chucked it in the trash and poured him a new bowl...)

3. For some, Chemo Brain gets very bad, then worse, then improves quite a bit. Who knows why?

I had to stop writing business project proposals for my company before my Dx with mets, because I could no longer focus, could not write an Executive Summary (SUMMARY became 19 pages and growing...), and on and on. I'm better now, though probably still can't write a proposal with a time deadline.

For me it feels like ADD (not ADHD) on wheels. Also like post-menaupausal memory loss, but magnified.

Anyone else struggle with it? Is it only people who are post-menaupausal?

Is it made worse by certain cancer drugs, or chemo, or is it there because of the cancer? Or other stress trauma and loss? FOr some, it is like Post Traumatic Stress Syndrome.

Do you experience Chemo Brain? What is it like for you?

By margaret27217
Posted October 15, 2009 at 12:47 pm
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I already have ADD so don't you know I'm a hoot! Wait until chemo - they'll be putting me in the dementia ward . . . I called the washing machine the lawnmower yesterday!

By maryk58
Posted October 14, 2009 at 6:42 pm
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When I had chemo the first time in 1993, my onco didn't believe that chemo affected the brain. Hell, my whole head would swell up and my wig didn't fit. The memory would slowly improve over the 3 weeks until the next treatment then back to square one. It was really terrifying because all one could think was - do I have a brain tumor now too?

When I was dx with mets to massive areas of bone in July 2008, radiation, dental surgeries, hormone therapy, pain pills, etc were contributing factors to my thought processes so I wasn't overly concerned about it. When I returned to work in Jan 2009, my brain suddenly went TOTALLY dyslexic, I contacted my sister-in-law who has training in Brain Gym which is used with autistic children, she sent me exercises to try to get my right/brain-left/brain communicating again. I thought I would have to quit my job, so frustrating to me and I know it was for my co-workers.
Three days after my first treatment with zometa, I woke up with my head clear and memory sharp as it was (for a 58 yr old post-meno). My bone mets were causing hypercalcemia-when I read the symptoms, I was stunned!! My labs were "within range" so it was never considered. Zometa saved my sanity. Now I'm on bunches and bunches of other chemicals so I lose words, especially names a lot. I called my husband a mutician one day - not sure if I meant musician or mutation... : )
Great topic!

By jojobeans
Posted July 2, 2009 at 9:53 am
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I was telling some dear friends about how when I went in last July for my Autopsy, they discovered that it wasn’t scare tissue, but a super enlarge tumor. I went on to explain that this was my second Autopsy and how the first one, they didn’t put me completely under, but this time they did. My friends were looking at me very strangely. They one of them said, you are the only person I know who could have two autopsies and still be alive to talk about it… Then everyone started laughing, I looked at them in a fog then 1… 2… 3… Oh I said autopsy not biopsy…Duh….This was the start of my “Cancer Brian”

The other day, I start cleaning my kitchen. I started to wipe down the cabinets, and the next thing I know, I have a counter full of things I want to box up because I never use them. So I went in the cellar looking for an empty box, notice the dryer had finish, so I folded the clothes, and added another load. I then went upstairs and notice my pantry was a mess so I cleaned out the pantry and organize it and realized I didn’t have BBQ sauce for my BBQ chicken dinner I was going to make. So off to the store. $110 later I am back in the pantry trying to figure out what I went to the store for. I put away the food and my son calls me to come pick him up from a friend’s house – where are the keys…. In the refrigerator… mmmm how did they get there… So now two days later I am sitting in my kitchen and realized that the stuff is still on my counter – guess I will go in the cellar to see if I can find a box… What was the point of this story?

I never had chemo, so I call this Cancer Brian or Over worked, Over stressed, Single Mom trying to do everything while fighting Cancer Brian…

By mindgardener
Posted July 1, 2009 at 10:26 am
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This is how bad it gets....I had forgotten that I had started this thread, until you (youse, y'all) responded.
Thanks for reminding me where I left my mind!

Talk about changing one's mind...
Morgan
The first thing to go for me is flower and plant names. I watched this happen with my mom, and with another bc person, who has mets also. She walks our 2 block area every day--has for 10 years---more power to her and to the power of walking, and maybe of loving gardening and gardens! All 3 of us started as kind of garden pro's re. latin names and common names of plants. Now I still know most of them, but some (columbine, hydrangea, others I forget) hide out in brain cracks and must be tempted or taunted to come forth...as you said, at 3 am. -Morgan

By Shanti
Posted June 30, 2009 at 3:27 pm
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I too have experienced different degrees of chemo brain with some definite improvement on and off. My husband is eleven years older then I am and can sometimes struggle to remember names, words, etc. I like to tell him that between the two of us we have one whole brain.

By w1pamela
Posted June 29, 2009 at 10:43 am
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Oh and BTW,
THE ----"my mind is skittering around on black ice trying to find a safe place to land" comment. THAT IS a PERFECT description of what is going on.
Thank you, thank you.
I am going to send it on to my friend that had lung cancer. She told me about Chemo-brain.
LOL
Pam

By w1pamela
Posted June 29, 2009 at 10:36 am
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HeH --- HeH! (laughing sarcastically)
Imagine where I am. Diagnosed in about 1998 with ADD both my boys are gifted ADD, I was close to a gifted level. Post menopausal, on Arimidex and Zometa, the Zometa being more of a problem then the Arimidex AND in College with 6 courses to go to finish my degree in Psychology. I have also developed the "looking thoughtful" response when asked a question. LOL. "THE "Hey, give me a minute here, I have cancer." excuse for everything. I just had to write to my Prof to explain why my paper was going to be a day late, thinking I was "Gold Bricking." When in fact I went to a site here about Zometa side effects and found out the the weeks worth of blah's, attention deficit, and feeling like I have the flu are all SE's of Zometa and Arimidex. Cancer is no longer and excuse for me it is a valid reason!!! AND I am using it were ever I can. LOL :-PPP on them all. Thank heavens a I intend to teach on line. It gives me a way to not respond instantly. Heehee.
Thanks for the info ladies and the article. Makes me feel almost "normal," well at least normal amongst the abnormal. Thank you all for the infor you provide
on this site.
Hugs,
PamW

By deborahmb
Posted June 28, 2009 at 11:06 am
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I am 7 years out of treatment for breast cancer (had surgery, high dose chemo, and radiation). Am so thankful to find this sight. Am on meds for PTSD, ADHD, Bipolar, Depression, and Anxiety and the meds do keep me glued together but the pieces to what was wrong never quite fit. Before treatment all the puzzle pieces fit and I could function just fine. Towards the end of my treatment and to this day it has been like going through each day living with puzzle pieces that would not come together. My oncologist and doctor never told me about chemo cognitive dysfunction and when I found this sight it was a lightbulb moment! I have felt so alone in this struggle to function and have searched the internet for answers. The puzzle pieces just all came together. What you described is exactly what I am still dealing with. My concentration, even with meds. is still bad. I begin one task and five minutes into it begin another and don't remember what I was first doing. I learn just fine, but when I try to communicate my thoughts get jumbled and I forget or can't find the words to explain what I am trying to say. It has been so embarassing that I have withdrawn and feel like a stupid freak and get so extremely frustated. I lose everything and can't keep my house in order and can't seem to finish anything. The fatigue is still disabling. Everyone, including myself, thought my life would return to the way it used to be but instead it has been such a struggle to keep myself glued together. For me the cognitive dysfunction has not gotten better and the psychological problems are real real real. Now that I have heard of this, I told my husband who helps me, and we are going to take the information to my doctor and get a referral to a neuropsychologist and hopefully get some help. Chemo brain is a chemical brain energy and should be delt with by a neuropsychologist or doctor or psychiatrist who has had training in this and knows how to help. Alot of the medical community and also oncologists do not know or do not bother to help breast cancer survivors with this side effect. I plan to mail information to my oncologist because he seems to not know or has researched this side affect. It is just an answer to much prayer to finally know what is wrong with me. In my personel research, chemo cognitive dysfunction (sorry have trouble with spelling) can be a permanent injury to the brain. I hope research and solutions will be discovered and recognized for the women who will be facing this in the future. This problem doesn't show up on stadardized assessments for those of you, like me, who need disibility help. That is why, I just learned that assessments should be done by a neuropsychologist who has had training in chemical brain injury. Please, does anyone else have this trouble and it is not getting better?

By mindgardener
Posted May 8, 2009 at 10:21 am
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Maybe John F. Kennedy had chemo brain? After all, he took steroids for a thyroid disease... When he was running for President, he realized he was not quick enough on the uptake, and worried about what he would do when someone in an audience caught him unprepared, with a question.

Someone famous--can't remember who, of course--told him, "You need a way to pause first, without looking stupid. So just say, "I'm glad you asked that question..."--that gives you a few seconds to think,

And so he did--on any of his campaign videos, there he is, making good eye contact and saying slowly in his New England accent, "I'm glad you ahsked that question..."

By barb366
Posted May 7, 2009 at 11:16 pm
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And what's funny - I think, that is "think", I read that Times article before but had to read it all over again. This year I could hide my own Easter basket and have a hard time finding it in the morning!
Now I'm not so worried since it's not just me. Now I can enjoy it :) I love a good laugh.

By mindgardener
Posted May 7, 2009 at 9:45 pm
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Ahh, it feels so good to be surrounded by you strong, lovely women with such wicked senses of humor!

Like lynnwv, I'm now perfecting my thoughtful look so people don't know my brain is skittering around on black ice trying to find a safe place to land.
Thanks Lynn--brilliant idea!

By kleighk
Posted May 7, 2009 at 3:52 pm
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AMEN to that!!! During my first chemo in 1994, my kids resorted to writing down things I said they could do and have me sign it because I would forget okaying something and they would have to show me proof that it was as they said!!!!

I also use a lot of lists----but learned the hard way that I have to date my lists so I know which one belongs to today. Otherwise I buy all the ingredients for the supper I already cooked last week!!!!

My family has learned to live with it--and it's actually a running joke "What is she gonna call it this time" as everything gets named something else!!

But, you're right--it was so nice when it was finally recognized as real!!! Before that my onco just said it was my hormones or shrugged his shoulders!!! How maddening!!

Okay, so now I'm going to go lay down and take a nap in the washing machine --er, microwave--er, bathtub---aaahhhh!!!!

By mindgardener
Posted May 7, 2009 at 12:01 pm
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Thanks for all your responses. When "Chemo Brain"
(StressTrauma Brain) was first talked about, ONLY people with breast cancer (and perhaps other cancers?) understood it, because we were experiencing it. Those who trusted their bodies, trusted their experience, and asked for help or found self-help methods (e.g., never talk on the phone while driving; multi-tasking is damaged, and you may either get lost, or in a crash).

Finally, a year or so ago, the NY Times printed a headline story, "Chemo Brain is Real." So docs and families finally had "proof" that what we told them was real. Sheesh.

New research shows that this condition is NOT caused by chemo--or I should say, as many people with breast cancer have it who never have chemo, as those who do have chemo. Same with radiation, etc.

We do not yet know the exact mechanism, but we do know it is real, and a neurological brain change, that sometimes individuals (some of us) improve with a drug change, or with time, or who knows why, and others stay the same or it gets worse.

How ironic that I once was a Learning Styles researcher and a research for E. Paul Torrance on Creative Thinking.

My own private idiosynchratic belief is that the symptoms are stronger with creative right-brainers, those who thrived on multi-tasking, thinking in images, brainstorming, divergent thinking. Are these also people who are prone to ADD? I think so....

(If I remember correctly, I just did Select All/ Copy/ the article you mention--then Pasted it into a blank MS Word doc.

Making piece with missing pieces--words, focus, etc.--helps, I believe. Now anything and everything I forget, mis-place (e.g., iced tea in the bowl of cereal), or lose track of (e.g., where was I driving?), I tell my friends, "Not my fault--CANCER BRAIN!!!".
-----------------------------------------------
Here's the old NY Times article-- Cancer Brain is Real

http://www.nytimes.com/2007/04/29/health/29chemo.html?ex=1178510400&en=fda0 46761b19beb1&ei=5070&emc=eta1
N.Y. Times HEADLINES
April 29, 2007

Chemotherapy Fog Is No Longer Ignored as Illusion
By JANE GROSS

On an Internet chat room popular with breast cancer survivors, one thread - called Where's My Remote? - turns the mental fog known as chemo brain into a stand-up comedy act.

One woman reported finding five unopened gallons of milk in her refrigerator and having no memory of buying the first four. A second had to ask her husband which toothbrush belonged to her.

At a family celebration, one woman filled the water glasses with turkey gravy. Another could not remember how to carry over numbers when balancing the checkbook.

Once, women complaining of a constellation of symptoms after undergoing chemotherapy - including short-term memory loss, an inabilit y to concentrate, difficulty retrieving words, trouble with multitasking and an overarching sense that they had lost their mental edge - were often sent home with a patronizing There, there.

But attitudes are changing as a result of a flurry of research and new attention to the after-effects of life-saving treatment. There is now widespread acknowledgment that patients with cognitive symptoms are not imagining things, and a growing number of oncologists are rushing to offer remedies, including stimulants commonly used for attention-deficit disorder and acupuncture.

Until recently, oncologists would discount it, trivialize it, make patients feel it was all in their heads, said Dr. Daniel Silverman, a cancer researcher at the University of C alifornia, Los Angeles, who studies the cognitive side effects of chemotherapy. Now there's enough literature, even if it's controversial, that not mentioning it as a possibility is either ignorant or an evasion of professional duty.

That shift matters to patients.

Chemo brain is part of the language now, and just to have it acknowledged makes a difference, said Anne Grant, 57, who owns a picture-framing business in New York City. Ms. Grant, who had high-dose chemotherapy and a bone marrow transplant in 1995, said she could not concentrate well enough to read, garbled her sentences and struggled with simple decisions like which socks to wear.

Virtually all cancer survivors who have had toxic treatments like chemotherapy experience short-term memo ry loss and difficulty concentrating during and shortly afterward, experts say. But a vast majority improve. About 15 percent, or roughly 360,000 of the nation's 2.4 million female breast cancer survivors, the group that has dominated research on cognitive side effects, remain distracted years later, according to some experts. And nobody knows what distinguishes this 15 percent.

Most oncologists agree that the culprits include very high doses of chemotherapy, like those in anticipation of a bone marrow transplant; the combination of chemotherapy and supplementary hormonal treatmen ts, like tamoxifen or aromatase inhibitors that lower the amount of estrogen in women who have cancers fueled by female hormones; and early-onset cancer that catapults women in their 30s and 40s into menopause.

Other clues come from studies too small to be considered definitive. One such study found a gene linked to Alzheimer's disease in cancer survivors with cognitive deficits. Another, us ing PET scans, found unusual activity in the part of the brain that controls short-term recall.

The central puzzle of chemo brain is that many of the symptoms can occur for reasons other than chemotherapy.

Abrupt menopause, which often follows treatment, also leaves many women fuzzy-headed in a more extreme way than natural menopause, which unfolds slowly. Those cognitive issues are also features of depression and anxiety, which often accompany a cancer diagnosis. Similar effects are also caused by medications for nausea and pain.

Dr. Tim Ahles, one of the first Ameri can scientists to study cognitive side effects, acknowledges that studies have been too small and lacked adequate baseline data to isolate a cause.

So many factors affect cognitive function, and the kinds of cognitive problems associated with cancer treatment can be caused by many other things than chemotherapy, said Dr. Ahles, the director of neur ocognitive research at Memorial Sloan-Kettering Cancer Center in New York.

The new interest in chemo brain is, in effect, a testimony to enormous strides in the field. Patients who once would have died now live long enough to have cognitive side effects, just as survivors of childhood leukemia did many years ago, forcing new treatment protocols to avoid lea rning disabilities.

A large number of people are living long and normal lives, said Dr. Patricia Ganz, an oncologist at U.C.L.A. who is one of the nation's first specialists in the late side effects of treatment. It's no longer enough to cure them. We have to acknowledge the potential consequences and address them early on.

As researchers look for a cause, cancer survivors are trying to figure out how to get through the day by sharing their experiences, and by tapping expertise increasingly being offered online by Web sites like www.breastcancer.org and www.cancercare.org.

There are Ask the Experts teleconferences, both live and archived, and fact sheets to download and show to a skeptical doctor. Message boards suggest sharpening the mind with Japanese sudoku puzzles or compensatory techniques devised to help victims of brain injury. There are even sweatshirts for sale saying “I Have Chemo Brain. What's Your Excuse?”

Studies of cognitive effects have overwhelmingly been conducted among breast cancer patients because they represent, by far, the largest group of cancer survivors and because they tend to be sophisticated advocates, challenging doctors and volunte ering for research.

Most researchers studying cognitive deficits say they believe that those most inclined to notice even subtle changes are high-achieving women juggling careers and families who are used to succeeding at both. They point to one study that found that complaints of cognitive deficits often did not match the results of neuro-psychological tests, suggesting that chemo brain is a subjective experience.

"They say, 'I've lost my edge,'" said Dr. Stewart Fleishman, director of cancer supportive services at Beth Israel and St. Luke's/Roosevelt hospitals in New York. "If they can't push themselves to the limit, they feel impaired."

Dr. Fleishman and others were pressed as to why a poor woman, working several jobs to feed her children, navigating the health care system and battling insurance companies, would not also need mental dexterity. "Mayb e we're just not asking them," Dr. Fleishman said.

Overall, middle-class cancer patients tend to get more aggressive treatment, participate in support groups, enroll in studies and use the Internet for research and community more than poor and minority patients, experts say.

The disparity plays out in all kinds of ways, said Ellen Coleman, the associate executive director of CancerCare, which provides free support services. They don't approach their health care person because they don't expect help.

But approaching a doctor does not guarantee help. Susan Mitchell, 48, w ho does freelance research on economic trends, complained to her oncologist in Jackson, Miss., that her income had been halved since her breast cancer treatment last year because everything took longer for her to accomplish.

She said his reply was a shrug.

"They see their job as keeping us alive, and we appreciate that," Ms. Mitchell said. "But it's like everything else is a luxury. These are survivor issues, and they need to get used to the fact that lots of us are surviving."

Among women like Ms. Mitchell, lost A.T.M. cards are as common as missing socks. Children arrive at birthday parties a week early. Wet clothes wind up in the freezer instead of the dryer. Prosthetic breasts and wigs are misplaced at the most inopportune times. And simple words disappear from memory: The thing with numbers will have to do for the word œcalculator.

Linda Lowen, 46, had a hysterectomy and chemotherapy for ovarian cancer 13 years ago, and says she still cannot recognize neighbors at the grocery store. "Once I had a mind like a steel trap, and I ended up with a colander for a brain," said Ms. Lowen, a radio and television talk show host in Syracuse.

The other night, Ms. Lowen set out to find a good place to store her knitting supplies. She began emptying a cabinet of games that her teenage daughters no longer played. Meanwhile, she noticed a blown light bulb and went to find a replacement. That detour led to another, and five hours later she had scrubbed every surface and tidied the contents of eight drawers. But she still had no storage space for her knitting supplies.

"I have an almost childlike inability to follow through on anything," Ms. Lowen said.

Solutions come in many forms for women whose cancer treatment has left them with cognitive deficits.

Sedra Jayne Varga, 50, an administrative assistant in family court in Manhattan, is part of a research study of the stimulant Focalin, which she said had helped. But Ms. Varga also plans to have laser surgery on her eyes so that losing her glasses will no longer be an issue.

Lu Ann Hudson, 44, a designer of financial databases in < st1:place w:st="on">Cincinnati, relies on a key fob that sets off a beep in her car when she is looking for it in parking lots. Terry-Lynne Jordan, 43, who analyzes environmental incidents for an oil company in Calgary, Alberta, uses the calendar on her computer and voice mail messages to herself to remind her of meetings.

And Debbie Kamplain, a 32-year-old stay-at-h ome mother in Peoria, Ill., hired a $30-an-hour personal organizer to help her sell a house, buy another and get ready to move her family to Indiana next month.

But it is Ms. Kamplain's 2-year-old son, Daniel, who sees to it that she stays on task. Long before Daniel could talk, he would pull her over to the refrigerator if she got distracted while getting him a drink.

Poor kid, Ms. Kamplain said. I say, "I'm going to do something," forget about it immediately, and he's the one who has to remind Mommy about stuff.
-----------------------------
End of NY Times article.

By nancyc
Posted May 7, 2009 at 9:39 am
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Going into menopause as though from a catapult into a brick wall....that's how I describe it after going from not so much as a peri-menopausal symptom ever, to full blown menopause. That happened when I started on Tamoxifen/Lupron after lung mets dx. I have some of the symptoms that you all mention, just not as severe, perhaps. I've never had chemotherapy, so in that regard, I'm really fortunate.
I finally got tired of looking for it, and put it in a folder, so I'm going to share a link to the transcript of a brilliant teleconference given in Nov '07 by Dr. David Sachs about the emotional wallop of a BC dx. You can print the transcript from the link for free. Do. Give it to anyone who doesn't get what you're going through, or acts as though you should "just get over it already".

http://www.lbbc.org/data/transcript-file/LBBCemotions07.pdf

Link to Managing Your Complex Emotions teleconference by Dr. David Sachs. 11/07

By lynnwv
Posted May 7, 2009 at 9:01 am
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You can count me in! It actually frightened me at first. When I was still working I was responsible for being the writer on a big project. The team would sit in meeting and discuss issues then I would put the information clearly into whatever document we were working on. It got so bad during the recommendation documentation that I started recording the meetings. I would drift away and they would be three recommendations ahead of me.

But for me the worse is to be in the middle of a sentence and forget where the heck I was going with the thought. Or not remember the name of a friend I've know for years.

I'm trying to perfect my thoughtful look, so people think I'm just in deep thought instead of in lala land.

By cherub21
Posted May 7, 2009 at 8:48 am
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heres my example of chemo brain
our hot water system died
went through the stress of not having water for a whole week before it could be replaced
OK fine but a week later I turn on the kitchen tap
no hot water again Bugger
call hubby in tears after checking all the taps
service man comes $190 later I was turning the flick mixer taps the wrong way getting cold water every time
Ha Ha bloody idiot LOL
some days are worse than others
and also more embarrasing

By Beachbabe
Posted May 7, 2009 at 6:55 am
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Count me in! I, like GGC, lost my brain along with my ovaries. I often joked that my grey matter came out with the placenta after I had my two children, but jet propelled menopause was much worse.

I make oral presentations as part of my job. I find myself having a lot of pregnant pauses now, searching for a word and waving my arms. I'm not gonna bring it up until the audience does...screw em...YOU try going through what we're going through and see how 'on your game' you can be. I also find when I write and re-read things I have COMPLETELY different words in places than what was intended.

Some days I think I could really use a 'shadow' to follow me around and keep me out of trouble...then again, I always could have used one tee hee.

Welcome to Inspire!

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