"CHEMO-BRAIN"

Okay, I feel better now...
I thought I was alone in this!

I am a 20 year survivor of childhood cancer. I'm only 30 and I can't remember anything. I forget major appointments and words drop out of my head mid sentence. It's been happening for as long as I can remember. (Pun totally intended.)

I had the following chemo drugs: Adriamycin, Actinomycin, Cytoxan and Vincristine. Any information about these and proven memory loss.?

I think what frustrates me most is that my husband "wins" every argument because I can never recall specifics about anything! That really sucks!

I'm not happy you're all in the same boat, but I'm happy that I'm not drifting alone here.

Flakey_Flake said:

I Miss Me
None of my caregivers ever mentionsed any SE of congnitive deterioation. Had I known what I was to go through, I may have declined treatment. As it is I made the choice to fight, and I will fight with all I have.

Shortly after my first round of chemo (breast c - dense dose A/C) I noticed I couldn't remember things. What little energy I could muster was wasted wandering from one room to the next. I was a sutdent at the time and I would read a paragraph three times to gather what it contained, only to have it empty out of my head when I read the next paragraph. At first I thought it was just fatigue. Then I started forgetting how to do simple things. Write a check, where dishes went, how to use the can opener. This started to scare me. I was like a lost child. I knew I couldn't continue school - it was ridiculous to try. I was very scared and didn't knwo what to do. I called my onc nurse in hysterical tears, trying to telll her what was happening to me. She was actually surprised I had not heard of chemo brain or chemo fog. She said that my onc didn't put must credence in it. I called my family doc, who gave me anti-depressants. They calmed me down a bit, but didn't really do much to change it. Since then I've been put on stronger anti-depressants, B comlex vitamins and prescription folic acid to see if that doesn't help with the memory issues. I have done internet reasearch on chemo brain, but can never remember exactly whst I've read. I keep trying to do things to improve my memory - read, play puzzles, etc. I don't see many poeople. My boyfirend and my son, who simply put up with my repetitions. When I go for treatment my boyfriend always takes me, so I have someone who might remember what was said. I can't find my way from the chemo trestment area to the waiting room with out help, and I have been going there for six months. I am easily confused - sometimes when I wash dishes, I can't decide if I should pick up the cup, or the fork, or what I am supposed to do. I seem to be able to carry on a conversation with friends who call me on the phone, but am always struggling to find words. I have explained to them about chemo brain, and they seem understanding of my recent shortcomings. I am sure there are times I repeat myself, as after saying something it will suddenly dawn on me I said it before. When I email friends and family and there are several messages in the reply, I will read them, and see that I have retold things as though it were something new. The really dumb part is, you never know when or where it will strike. Sometimes I have to ponder for five minutes to remember how to pay a bill online. Sometimes I can just zip right through it. I leave car doors open, food on the counter, dishes half done, I never know what I will find. I scare me. I am afraid to drive, not because I mght hurt myself, or my car - but how would I live with myself if I hurt or killed someone else knowing that I am not at capacity to responsibly control a vehicle.

If I were an employer I certainly would not hire me. And I have a very good reputation for being a dependable worker, quick to learn and eager to tske on responsiblility. But I am no no longer that person. Will this dissapate over time? Who can say? My family doc at least will acknowledge what chemo brain is, but seems to think it will cure itself once chemo is over. I hope she is right, but there is no guarantee. In the mean time I will continue to be treated for depression, and I am seeing a nuerologist for essential tremors. I am not sure yet what his take on chemo brain is. I will ask on my next visit, but I will not be surprised if he poo-poo's the whole thing. After all, what test is there to confirm or deny chemo brain. Many of the symptome mimic depression. As far as I can remember (HA!) from reading up on chemo brain, there are no distinct markers where someone can say for certain it is chemo brain or something else. In the medical world it seems to be a very subjective topic. I am applying for disability, but will have to try for it on depression, as as far as I can tell SS Disability does not recognize chemo brain either.

I joke when I can about it, but inside I am crying. I miss me.

Hi
I miss myself so much. I am different now.... My oncologist denies "chemo brain " I told the dr I disgreed with her. My neurologist , Finally agreed with me. He said the chemo changed my brain. Short term memory problems..... concentration problems.... and just being ME. I do understand a little of what you are going through.

Chemo Brain
I am a 4 yrs survivor and to this day I have "chemo brain". In the beginning it was very frustrating but as soon as I found out that it is a real condition brought up by the treatments I came to accept it but I never let it slow me down. There are a few things that one needs to understand, some memories are just dormant whereas some might be gone. Just keep a journal for a while and read it over and over. Ask others to write letters describing events and people in you life you might not remember,don't fret when you can't find the right words or memories, or if you dont remember a person's name...explain to them you still recovering from cancer and a side effect is chemo brain. Try and learn a new language, that engages the brain to pull memories stored within. The most important thing is to remember that you are still you and that you have survived cancer, even though memories are the casualties suffered in the battle.

On your side have episodes I
On your side have episodes I feel embarressed about. Took for a year. with radiation.

yarrowoman said:

chemo brain: me too!
it has been 20 years for me and i still have severe chemo brain. i too had a high IQ and 3 Masters degrees. soon as the chemo was over it was a whole 'nuther brain. trouble reading and comprehending books ..... imagine, i zoomed through 4-5 a week before! lots of mental confusion vis a vis milk in the oven, sneakers in the freezer ...slow processing speed, and the brain fatigue.........i also have fibromyalgia which has a cognitive component they call "fibro fog" so maybe that is what gives me a double whammy...also diagnosed after chemo. i have been on disability and was recently terminated so i have been doing a lot of research on chemobrain for my appeal. amazingly experts are starting to listen. my cognitive defects have consistently shown up in neuropsychological testing and also in SPEC imaging scans taken a couple years after chemo. i haven't had a very normal functional life since chemo and provigil has helped me a lot too, but no cure. i have found taking coQ 10 and omega/fish oils to be very helpful in helping my brain be less cloudy. I found 3 major researchers who have written books and data and read about some newer PET brain scans that seem to substantiate the brain changes. i think they have to be specialized scans...my onocologist says....i am patiently researching that now....
google these names: Dr. Daniel Silverman, UCLA
Dr. Stewart Fleishman, Beth Israel Med Ctr. New York, NY
Mark Noble, U of Rochester

they have contributed significant data toward this problem. we do need more.....in the meantime...can someone make the login password easier for me to remember? ; )

15 years later, I now know i'm not crazy
THank you for your post...I had cancer at 12 years old, and 2 years of chemo (adryomyacin, cisplatnin and high-dose methotrexate-sp?) plus a limb-salvage, and all this left me in a whirl-wind. I was only a child, with home life problems as well, so I never had the proper support or ability to understand what was happening to me. I had memory lapses so bad that I thought I was having a mental breakdown, and my short and longterm memory had deteriorated to such a scary point that i couldnt remember enough to explain what was happening to me. I am many years out, and so, now have the luxury of hindsight, and I can see that stress (chris this may be important for you) perpetuated the "episodes" tenfold--as it does to this day. I still have very frustrating cognitive issues, health as well, but after 15 or so years, I can see a marked improvement in my brain function. I think the biggest contributor to this rehabilitation has been my decision to go back to school, and the effort I have put into studying. This is such a catch-22 though. I have been taking math classes consecutively for almost 2 years, and in that time my memory has improved more than it has in the previous 10 years. Although, I have had to put in 3-4 times the effort of the best student in class-- to do well--and I come from a highly educated and intelligent family (PhD's on both sides). I used to be very good at math, and now find my ability to learn new concepts (in any field really) to take much repetition and careful reading. I may reread a passage in a book, or ask someone to repeat a statement one or two times. I need much more practice to "grasp" concepts that should come easily. My professors are very kind but at a loss as to how to help me.

The years of having issues and problems, that were not forewarned by doctors, has been difficult. I have been so embarrassed by my "episodes" and inability to recall words during a conversation, but I have also felt so alone and distraught not knowing why my life felt so difficult since chemo. I have some difficulty from the surgery, but when I am doing well, cognitively, I feel...normal. yes, I get glimpses from time to time, where I remember what It was like to 'be' in the world, before chemo. The "chemo Brain" makes me often feel like I am mentally elsewhere, and I can t just be present and enjoy what is going on around me. I have found some relief in a few of the MANY things I have tried over the years. Some of the things I believe have helped with the rehab are: exercise, regularly; eating a diet of unprocessed food (or as close as possible);
interestingly...taking niacin (starting at low doses and moving to very high of the flushing kind) after exercise and sweating in the sauna--I at first I felt as if I went through a round of chemo again, but after a few doses, I felt like chemicals had been purged from my body; Vitamin and mineral supplements--I take extra magnesium, I haven't figured out an exact does, I just "feel it out." Also, acupuncture and Qui-gong (same type of thing) helps my concentration and overall well-being. I think it just helps with stress management, which is a huge factor in how my memory and cognition are functioning.

I am so relieved to have this validation. I just found out last-night. I cried before I went to bed, as I read all of the acknowledged symptoms on the ACA website. I was only warned about a few issues that could arise when i did treatment 15 years ago. Athough, to be fair, 15 years ago chemo was just starting to have marked success in treatment. I am reading 'The Emperor of All Maladies: a biography of cancer" which has been an incredible educational journey about this disease. I recommend every cancer survivor read it. I am studying Molecular Biology, with the hopes of furthering cancer research, so this insight as to how/when/why discoveries were made is invaluable...also, as a tool for my own healing. With treatments and successes as new as they are, it has been hard to navigate my way through the years following diagnosis...like the phantom pain many amputees suffered with silently, until after wartime, it was discovered that these patients ere not crazy--there is a neurological effect to loosing a limb. I believe now that we are the fist generation of patients suffering from symptoms, that are just now recognized, that will hopefully documented and studied for the next generation.

I still struggle each day, and draw my strength from the drive to see that other's lives don't end up with years post-chemo as difficult as mine. I read on the ACA website that there are drugs (used for ADD and those to tread Alzheimer's) that may help. has anyone tried them? I find navigating the medical system with a not well documented diagnoses (or in my case 10 years ago, not documented at all) as "Chemo Brain" is, has been a nightmare. I am also hoping to get some insight from folks on how to broach this with my doctors, so I may get the help I desire--and preform at the "normal" level of my classmates. I am an excellent student, with great determination, but I tire easily, and spend--sometimes wasted--hours studying, only to find myself staring at a test and trying to recall where to begin. Or, getting half way, and forgetting how to continue....and for chris, in extreme cases, I have taken tests, failed, and not remembered taking them this rarely ever happens anymore though.

Thanks for listening to my rambling. I have waited for 15 years to let this out.

Maggie

rooneyj said:

Used to be able to spell....
According to my well known oncologist in Portland Oregon - there is also no such thing as chemo brain. I miss myself. I miss my life and my connection to others. I don't laugh as easily - 'cause I don't get the jokes very well! I get tired and overwhelmed easily. I spend way too much energy trying to be "myself", and to function adequately at my job. Post it notes, and my cell phone serve as my memory - but the amount of errors I make embarrass me. I am a teacher and have created systems to catch my errors - student files of homework for those assignments I grade, but don't put in the grade book, my cell phone, post it notes, and a large dry erase board. But the stress of trying to do a good job with my funky brain is taxing, as well as dealing unhappy students when I make errors. I felt chemo disconnecting me from myself from the beginning...told my best friend that "it feel like it's disconnecting me from God". I have had chemo 2 1/2 times and still have cancer...don't know if I would be willing to do chemo again - I'd rather be dead than an empty shell. Recently heard that ritalin type drugs can really help - anyone with experience with these?

Rooneyj
I can relate to your memory issues. I'm NED post treatments ended July '09 and still have memory issues. I rely on post-its and writing things down as soon as need to, otherwise, it's gone. Even walking down the hall with a thought to do something.....if I don't write it down NOW, it's gone.

In my local paper 2 weeks ago there was an article by researchers at Washington University, St Louis. Claim chemo brain is real and can last up to 5 years after treatments have ended. It did not mention if have multiple rounds of chemo, and what that might do to one's memory. Luckily I'm no longer in corp world, but if I were I'd be a mess.

Ritalin? Not sure if I'd take it as adamant about any drugs, but if it helps your memory surely worth looking into.

Best to you,
Jan

bluerose said:

Hi Chris
I am a long term survivor who has chemo brain and have seen the medical field change over time regarding this issue. First it was thought that none of the chemo drugs crossed what they call the blood-brain barrier but now they know that some do.

We have a memory clinic here in Canada where I live that usually deals with Altzheimers and Dimentia but does testing on all sorts of other issues now regarding memory/confusion, cognitive stuff, and so I was referred there by my doc a few years back. I was fine on all the testing, scored high in fact, but they did see signs on my CT scan of a slight abnornality but it wasn't significant enough they said to be causing my issues, so back to square one.

The neurosurgeon said that they are seeing more and more long term survivors with this 'chemo brain' and I found it interesting because a neurosurgeon had now started to use our lingo and years back they would never have done that and didnt. Slow progress.

Anywho bottomline is that some chemo drugs do cross the blood brain barrier and at least one of the drugs I had was on the list. I forget the other drugs I had, big surprise, lol. So the neurosurgeon said that this wasn't a dementia or Altz. but could be explainable by 3 possible issues all put together. One is the chemo drug crossing the barrier, the other was the aging process and the third one was stress. It all made sense to me. He also said that side effects from any medications I was on, especially the morphine I have to take for my back, could contribute to the confusion/memory issues as well.

So bottomline for me is that chemobrain probably isn't the result of one thing alone but rather a combination of the above or some.

I can't have an MRI because I have a pacemaker, due to heart damage from a chemo drug, so they could not go a little further in looking at it. The neurosurgeon said that there is nothing you can do about chemo brain although some people have had some success with an anti depressant and something else but again I can't remember what the something else was. Oh wait I remember now, sigh, it was a drug that is normally used in the treatment of ADHD, ritalin. No thanks, I have enough medical problems than to try that too, for myself. I am already on way too many drugs for the rest of my life.

All the best,

Bluerose

Chemo Brain
I am an almost 8 year ovarian cancer survivor who experienced chemo brain. I still lose words and very often can't remember numbers. Pretty bad for an accountant. However, my way of dealing with it is through nutrition. My chiropractor referred me to a compounding pharmacist who is also a nutritionist. I have been consulting with him and owe my good health to following his advice. I eat organic food which eliminates chemicals, pesticides, food additives, and other offending ingredients. There is no "Pink Slime" in my diet. I also work out and lift weights. He also has me taking a variety of supplements based on my needs which have made a major difference. Due to the nature of the surgery I use bioidentical hormone replacement which is prescribed by my oncologist and is compounded in his pharmacy. This lifestyle change is also supported by my oncologist and physician. I had to search for physicians who aren't so quick to prescribe drugs and are willing to try other options. So I suggest finding someone like this practitioner. I am firmly convinced that what is in our food and drink is the cause of our cancers and will continue to ruin our health and even kill us.

Luna6517 said:

Rant about my own experience...
I have never had a doctor tell me about "Chemo Brain." I learned about it on my own, researching reasons for my trouble remembering things, getting lost easily, being unable to process information given me, etc. This is actually one of my main reasons for joining this community... finding out about other people's experiences with deteriorating cognitive functions.

I've especially noticed this recently. I've always been teased about my horrible sense of direction. I had to work a lot harder than usual during my math classes my last year of high school and first couple of years of college. I have a very good vocabulary, and even though I know the word and it's meaning, when I'm speaking my brain won't supply me with the word itself. Whenever I don't understand a concept, or someone grows frustrated with me because I need them to repeat themselves because I didn't process the information they were trying to tell me, I don't know whether its because it's just who I am, or because of the cancer treatments.

I don't like using "Chemo Brain" as an excuse. I certainly don't have as extreme a case as Chris, but I realize that my learning abilities can be hampered by this. I'm having a hard time reconciling what could possibly be a very debilitating learning disability, with laziness.

I wish I could take every fault, every single aspect of myself that I don't like and put it in a "Cancer" category and a "Just Me" category. At least then I'd know what I should actually put some effort into changing.

I work in a tech job and it is tough
I started taking Vyvanse and it helps
I still have an incredible memory, sometimes short term is lapsed and stinks.
Retention is my problem now, I have to really work at new information.
I've never used it as an excuse and always push myself, even if I work an extra few hours a night.
My cube is peppered with notes and docs to be right in front of me, I created a system where I type out key points and then put them into documents and post them up, I will rewrite things, basically just copying them into a new document.

I always carry a Moleskin with me and a pen.

Yes, chemobrain is very real

Yes, chemobrain is very real, and from what I've read, how severe and how long it lasts (up to permanent) depends on the chemo drug(s), the dosage, and the duration.  The article I read stated that Cisplatin (aka Platinol) is the worst for chemobrain, and both of my chemos had Cisplatin, and the second round of chemo had it at very high dosages, for 24 out of 25 (yes, 25) hours per day (24 on, 1 off) for a week, then two weeks "off" (first of the two, excruciating/horrifying pain, second in the hospital with neutrophill coundts around 0.015 (should be 1.15).

I can be in the middle of a sentence (or even a word), and forg ... what were we talking about?  Yeah, something like that.  Or, it'll be a word, usually a word I know quite well, that I just can't seem to remember.  Still other times, I'll know the word I want to say, but it's as if I can see that word on one side of my brain, but need to get it to the other side to be able to say it, but cant.  Fortunately, my friends all know to start cueing me if I run into any of those (e.g., "we were talking about ..." or  "you were saying ..."  or I'll give them whatever I can so they can tell ME what the word I want to say is---surprisingly, this works quite well).

 

thank you flaky-flake for your MISS ME post

Thank you for your post, I was a high IQ high functioning computer geek.  After Chemo and Herceptin I am now having to relearn basics including reading and writing, words, spelling, etc.  Your post summed it up EXACTLY. 

Chris, each person is different,  like you I got hit hard but medical field is clueless, my guess is metabolism or low body fat resulted in accidental overdose.  But everyday is ground hog day, I have to relearn the same things over again (kitchen, phone, email, family and friends names, and usually remember nothing of the prior few days), and like flaky-flake I try to avoid driving, but ironically you need to drive to get to doctors.  I used to help others, hold doors, help strangers load groceries; now I am on other end and when I fall out of blue (post chemo issue) like someone bumped you behind knees and boom down, strangers help me.  Husband still computer geek, and made it so DRAGON and other SW can figure out my chemo induces slurred mixed up words speech and help me auto type.  I have no recall of what I did professionally, I know I trained my husband years ago in the field, but we have tossed the towel in after repeated attempts for him to teach me back.  If you still have humor ... he says back to me ... you are now your Mother (a joke meaning I am now beyond able use of computer let alone design, program, and maintain them).

I miss me too, but worse, are those I cared for now having to spend huge dollars to get sitters and move into assisted living places that cost more than anyone I know can afford.  Try finding a lawyer or hiring AllSUP to help you file a claim or (some word that means fight the denial)