Chemo brain
 

Hi everyone
I suspect this information may have been posted before but felt it was worth revisiting.

I have just read Your brain after chemo by Dan Silverman and Idelle Davidson (a her 2 sister)

This book has been really helpful to me in understanding some of the memory and cognitive problems following chemo so thought it may help others going through treatment and afterwards

Ellie

Re: Chemo brain
 

Hi Ellie,

I appreciate your letting people know about my book. I have received countless letters from others who have told me how important "Your Brain After Chemo" has been to their recovery, so I believe it is a valuable resource. I'm happy to answer any questions about "chemo brain" as this forum -- this wonderful community-- has been there for me. I am indeed a her-2 sister, coming up on 5 years of remaining cancer free. My join date says 2009, but this was the first online community I turned to upon my diagnosis.

My best to all.

Idelle

Re: Chemo brain
 

Just a note, I keep meeting more and more people with "chemo brain" but who have never been on chemo, so we're not alone! However it does drive me crazy sometimes that I want to say one thing and another word comes out of my mouth!
People suggest playing bridge to help stimulate the brain, bridge seems to be quite addictive.

Re: Chemo brain
 

Sometimes I'll be grasping for a word, and I just can't think of it - something stupid...

I remember once trying to spit out the word "barbecue" and I couldn't remember - had to describe it - you know, that thing you cook on outside... Oy vey!! Chemo brain strikes again.

at least we have an excuse...

all the best
caya

Re: Chemo brain
 

Sarah and Caya,

Problems with word retrieval are common among people who have been through treatment and it was something I experienced too. Almost everyone I interviewed for the book mentioned it! In fact, it's that "tip-of-the-tongue" phenomenon where you can almost see the word in your head. You may know it has two syllables and has a "ka" sound at the end but you just can't pull the darn thing up. Then suddenly, when you're doing something completely unrelated, the word pops right into your head like it was all some silly mistake.

Neuropsychologists explain this frustration as being tied to processing speed, perhaps the hallmark of chemo brain. It's as if you're an outdated computer. Your information processor still works but it's maddeningly s-l-o-w. So calling up words, multi-tasking, etc., etc., all take that much more concentration.

What to do about it? The experts differ on this. Some say practicing puzzles or other mind games like sudoku will help. Others say that practicing sudoku will just make you better at sudoku and won't do much more for you than that. But I believe -- and what I have observed in myself-- is that a variety of different tasks or games that are mentally stimulating along with physical exercise (which promotes blood flow to the brain), can do wonders. And games like bridge are not simple games! They require a number of complex cognitive skills, like logic, decision making and processing speed, not to mention that it's social too. Those skills all translate to other tasks.

Take care!
Idelle

Re: Chemo brain
 

I have the same problem as Caya all the time, I struggle making a sentence at times.

What really disturbs me about this is that I was always excellent at spelling, but now struggle for simple words when typing, which I know but cant think of. I find I keep checking words with hubby as I know as soon as I type them, they're not correct!
It's very frustrating as spelling and speaking were always two things I did well and used in my career.
I'll definatly look for this book:)

Re: Chemo brain
 

Hi Tricia,

I was an English major with a French minor in university - spelling, grammar, words etc. were basically my raison d'etre. Oh, how things change...:)

all the best
caya

Re: Chemo brain
 

So many of us take a hit in the area of language. I try to practice what we preach in our book and I'm much, much better now in terms of my focus, word retrieval and other thinking abilities. But I still have some residual issues with typing where I'll drop words (I hope I haven't done that here!). I'm usually able to catch the errors if I read what I've written out loud.

Re: Chemo brain
 

Idelle,

I have your book checked out from the library. I'm so glad you wrote it. I suffer from retrieval failure like most. There was an experience shortly after treatment when I couldn't remember the names of vegetables at Subway and everyone in line laughed at me. I was so embarressed. Luckily I've improved since then.

Exercise seems to help me make rapid improvement. I discovered I need to work out at a more effective level when I lucked into prescriptive exercise for cancer survivors.

Nice to hear from you on the board,

'lizbeth

Re: Chemo brain
 

This is the third time that I have to work on my cognitive problems after recovering from a serious illness. I am happy to report that 'third time is the charm': I finally conquered it by reaching out for support and keeping myself busy with this wonderful and effective support group.

It requires time and conscious effort. But it can be done. When I woke up from a semi-comatose that had lasted for 10 days after a 23-hour brain surgery, many people had written me off. They thought I was 'brain damaged'. And I did act like it - for 'quite' a while.

Keep a positive attitude. Reach out to the persons who care about us. Exercise regularly - both physically and mentally. Take challenges - I'd taken three semesters of Spanish at two different occassions. The brain will revive itself by 'reconnecting the dots' and pull us out of the 'fog'.

Re: Chemo brain
 

I once mentioned my "chemo brain" in a breast cancer support group and the facilitator (not a survivor) said there was no such thing. Very dismissive. I told her I begged to differ. It is vindicating to see that this condition is being recognized

Re: Chemo brain
 

Here is an ACS link to the subject:

http://www.cancer.org/Treatment/Trea...n?sitearea=MBC

Re: Chemo brain
 

Idelle,
So glad that you mentioned the importance of physical activity for cognitive functioning. It is one of the more basic things we can do to help ourselves but often overlooked out there.
kz

Re: Chemo brain
 

I'm a year out from chemo. Things have greatly improved, but there are still times I can't remember names. Also, just started a boot camp exercise class and on some of the things I have to really work to tell my mind what to tell my body. I'm sure that will get better too.

Re: Chemo brain
 

Karen and everyone,

Yes, physical exercise is hugely important to recovery. Not only does exercise increase blood flow (and oxygen) to the brain as I mentioned earlier but 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.

And there is also a large study just out in the July issue of the Journal of the American Geriatrics Society that focused on teenage physical activity and how it reduces the risk of cognitive impairment in later years. But it also looked at what happens to women who are not active as teenagers and become physically active later in life (age groups 30 and 50). Those women showed a significantly lowered risk of cognitive impairment as well.

There's a good summary of the study in Science Daily at this link: http://www.sciencedaily.com/releases...0630071139.htm

Idelle

Re: Chemo brain
 

Hi Idelle,
Yes, even some of the old lab studies with the "couch potato" versus exercising rats are still exciting to think about. The active animals lost weight, were more agile, and the benefit in terms of their neuronal connections was astounding!!

Thanks much for posting the piece on adolescents and exercise. And now with all the PE classes being cut due to budget problems- not very good long-term planning for our youth.

Re: Chemo brain
 

Bonnie,
I am sorry you were treated dismissively, and glad that more people are learning more about chemo brain now. Thanks in part to Idelle!

You can also read about chemo brain from the patient's perspective (along with results of new research, etc), in Beyond Chemo Brain: Recovering After Surviving. I wrote this book after 4 years of living with serious chemo brain.

After years of wandering through the maze of chemo brain, I read a book written by a brain injury patient (called Brainlash). Finally, I found somebody who know what I was going through. I'm hoping that my book, along with Idelle's and others, will help other chemo brain patients know that we DO know what you're going through, and will help lead the way to recovery.

To our brain health! - Carol

Re: Chemo brain
 

Thank you, Carol! Best wishes on your book.

Re: Chemo brain
 

Wow - just caught up with this thread and I know that it is true that even with the low dose chemo I took - I have all the symptoms! UGH! And .... I'm American but I live in Sardegna Italy --- so try dealing with cancer and doctors and PET scans (like my first one today!) in ITALIAN! And I only lived here 3 years when I was dx and .... well, my medical Italian is improving --- lots of times I am sooooooooo lost! I do find comfort in having at least the option to say -- hey! Its just chemo brain! I'm not crazy! (ok --- maybe I am!?)

:-) Thank you for the advise and I'll put your book on my wish list for the next one of my friends to bring me from the US in ENGLISH!!!!!!!!!

I do exercise and am recovering more and more strength the further I get away from Herceptin (last treatment in April 2010) so that is cool - but now I am swimming in the sea as my fiancé and I have a place at his work which is on the west coast of Sardegna and it is LOVELY! I do at least a 1/2 mile in the mornings and sometimes do the same again in the evenings with Carlo but I put on my fins on as he leaves me behind so quickly, as I am still not swimming strong enough yet to keep up with him! I think it is helping! Will try to find someone to play cards with!? :-) Hard to do here in Italy - but maybe playing Hearts on my computer!?
;-)

Thanks again - Karen

Re: Chemo brain
 

Karen, you are swimming each day in the sea?! How impressive is that! I swim too but just in a community pool, and although I love it, I can't think of anything more lovely than a morning in the sea.

You're doing a lot cognitively already with swimming and having to navigate through the maze of medical tests and procedures while speaking a second language. All is great stimulation for your brain cells.

And no, you're NOT crazy, you're not imagining things. "Chemo brain" is real. Hang in there...and enjoy your amazing life with Carlo.

Re: Chemo brain
 

Well, I swim most all days unless the waves are too big! But most times now (because it is summer) it is really calm and well, we have no sharks so its not scary! Plus the water is so transparent and clean and clear --- it is AMAZING! I truly do live in paradise. I know it - I am so lucky! Also, did I mention that because I have "permission to live here" from the government all my health care is 100% paid for!? I have spent in all my therapy less than 200 euros and that was just because I had to pay for my gync apt and my first mammogram (after I found the lump) I paid for (45 euros!) because I didn't realize because I don't "WORK" - I am entitled to free exams. So even the PET scan I did today was free! How cool is that!?

AND, thank you for saying that I am getting stimulation, however I feel really really stupid every day as I can't speak english great anymore (as it is degrading) and my Italian doesn't seem to be improving! UGH! Piano, piano (which means .... slowly, slowly) and all will work out --- I HOPE!

If you want to see some amazing photos of my life here (and my very cool first year organic garden!) and sea photos .... you can see me on Facebook at Karen Wheel. I'm the only one in Sardegna!

I am also trying to finish a book I started before cancer --- and now I am over 1/2 done. It is about the life I found here and the courage it took to change my life to move here --- leaving big corporate job and selling my house and pulling all my money out of the US --- for true love and a simple quiet life in Italy. After I got cancer it was so hard for me to think of how I keep writing the book on paradise and longevity and courage when I didn't know if I would live.... so when I got my head around beating cancer .... then the book started to really come along! Hoping to finish and get it sold by the end of the year --- HOPE! But my big organic garden, morning and evening swims are cutting into my writing progress! :-)

Thanks again! Karen

Re: Chemo brain
 

Karen,
What I learned about chemo brain is related also to why many of us seem to have so little energy for a year or more (ten or more for some of us!). Because of all the chemo drugs, our cells aren't making enough mitochrondrial (the powerhouse of the cell) energy to keep the free radicals in check. Some people (especially those with the ApoE4 gene) have a harder time recovering the free-radical balance than others. This is not to say you won't, but I find it's helpful to know there's a good reason why I can't keep up with others. Better than feeling like a wimp, which I used to!

Relaxing and enjoying are good for healing! Exericse, too. You're on it!

If you want, you can email me at Carol@BeyondChemoBrain.com, and we will get you a book, in English, across the ocean!

Your compatriot in brain recovery,
Carol

Re: Chemo brain
 

Hi Carol,

The effect on the mitochondria is interesting. It makes me wonder if those who would tend to stay NED might ironically be those who suffer the most from the slow recovery in one way or another and would have the ApoE4 gene.

Hi Karen,

If the info indicating that the Italian health care system has the best outcomes is right, it also sounds like they have enough sense to consider health care to be a high enough priority and important enough to cover everyone there for it....

Best to you,

A.A.

Re: Chemo brain
 

A.A., it's probably the chemo brain, but I'm not following you (and I would like to!). Can you explain what you mean? Thanks. - Carol

Re: Chemo brain
 

I don't know if cancer has ANY simple answers! But I wonder if those who are able to have their mitochondria stay in slo-mo -- even if it means they are also the ones who suffer the most in terms of chemo brain or other side effects of slow mitochondria, like having much more difficulty with weight loss -- also end up being the ones who don't have recurrence.

I just am idly wondering of those of us here who don't have recurrence also happen to have the ApoE4 gene.

Does that make more sense? If not, let me know.

A.A.

Re: Chemo brain
 

Karen,

Yes, I want to see your photos and hear more about your book. I will send you a friend request through Facebook. All the best. Idelle

Re: Chemo brain
 

Wow, Karen, you sound like you really are on the road to complete recovery. In some ways, cancer gives us the opportunity to redo things in our lives we probably need to. You started that even before your diagnosis! It looks like your test results are good, too. Congratulations!

Recently it has occurred to me that I live in the wrong country for my situation. All my medical problems are results of medical treatments that were paid for by insurance. But it seems that everything I need to recover now is "experimental" (because chemo brain hasn't been officially recognized?) and not covered. Therefore I pay for the unpredicted side effects of my treatment with my life (inability to do much), my time (hassling with insurance companies) and my money (they don't pay). What kind of a system is this?! If I lived in any other civilized country, at least I wouldn't be dealing with all the phone calls and hassles, and I wouldn't have to come up with money I can't earn because my brain is fried. Sorry, every once in a while it gets to me!

If I could travel, I'd come visit you and help you in your garden! Just kidding. (And I can't travel - can't do airports, freeways, loud noises, crowds, etc. But I can sit at home and write, and watch birds and take photos, and read!)

I haven't managed to take on that big scary thing called Facebook yet, but when I do, I will look for photos of your beautiful life! Thanks for writing.

- Carol

Re: Chemo brain
 

A.A. - Hmm. It's good to think about possible benefits, but I can't think of any reason that not being able to make enough energy would keep cancer away. Also, people with ApoE4 have a harder time recovering from brain damage and more likelihood of other neurological problems (it's sometimes called the Alzheimer's gene, but that doesn't mean we'll necessarily get AD. I'm glad to know I have it, because now I know I need to go all out on eating well, exercising, avoiding toxins, etc. and not taking any shortcuts!)

I'm thinking that if we could process those free radicals better, we would be healthier, not more cancer-prone. But who knows. Luckily there's lots of research going on these days. I love finding out new info, right here on this site!

- Carol

Re: Chemo brain
 

Carol,

I was thinking based on the way chemotherapy supposedly works on fast-dividing cells, with cancer cells being fast-dividing so they require lots of energy -- that if our mitochondria are kept in slo-mo as long as possible, that would slow down the development of the cancer cells. But unfortunately it also might be causing the severe problems like chemo brain, as well as slowing down our metabolism and resulting in the problem of weight gain of fat, which then seems to contribute to inflammation and recurrence.

Those are the kinds of unpredicted results that can happen when an extreme therapy is given in hopes that it will work -- it can end up very having hidden ways of contributing to the very things it is intended to prevent.

A.A.

Re: Chemo brain
 

This has been such a helpful and informative thread. It validates for so many of us what we knew intuitively. Thank you.

Re: Chemo brain
 

Lyce, Karen, and everyone, I meant to mention that there was a very good interview about chemo brain on National Public Radio with my co-author Dr. Dan Silverman at UCLA. Dan and Robin Young of "Here and Now" speak for about 15 minutes and their conversation is well worth hearing. I'll be curious to know what you think. Click here to be taken to the interview.

All the best,
Idelle

Re: Chemo brain experts
 

Hi Everyone,

It's not my intention to distract from our community here but I did want anyone who is interested to know that I have two highly respected medical experts contributing to my blog on chemo brain. They're busy doctors but they do answer readers questions from time to time.

One is Robert Ferguson, Ph.D., a clinical health psychologist at Eastern Main Medical Center who has been involved in some of the breakthrough research in the field of cancer and cognition. He runs a cognitive rehabilitation program for people who have been through cancer.

The second expert is Dan Silverman, MD, PhD, a distinguished neuroscientist at UCLA who is the coauthor of our book, Your Brain After Chemo. As many of you may know already from my previous posts, Dan was involved in one of the pioneering imaging studies that connected the dots between chemotherapy and cognitive dysfunction.

Dr. Ferguson just recently posted an answer to a reader's question and you'll be able to view it (and ask your own question, if you would like) at www.YourBrainAfterChemo.blogspot.com.

Just thought this might be something worth mentioning.

All the best,
Idelle