Chemo brain

Ellie F · 06-08-2010, 02:53 AM

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

imdavidson · 07-07-2010, 11:57 PM

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

sarah · 07-08-2010, 08:54 AM

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.

caya · 07-08-2010, 09:12 AM

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

imdavidson · 07-08-2010, 12:41 PM

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 It's as if you're an outdated computer.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

tricia keegan · 07-08-2010, 05:59 PM

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

caya · 07-08-2010, 07:42 PM

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

imdavidson · 07-08-2010, 10:43 PM

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.

'lizbeth · 07-10-2010, 05:05 PM

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

Jackie07 · 07-10-2010, 08:50 PM

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'.

BonnieR · 07-10-2010, 09:09 PM

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

Jackie07 · 07-10-2010, 09:50 PM

Here is an ACS link to the subject:

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

karen z · 07-11-2010, 04:33 AM

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

PatriceH · 07-11-2010, 08:30 AM

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.

imdavidson · 07-11-2010, 09:31 AM

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

karen z · 07-11-2010, 01:15 PM

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.

Carol.hope · 07-12-2010, 06:31 PM

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

imdavidson · 07-12-2010, 08:39 PM

Thank you, Carol! Best wishes on your book.

Karen Wheel · 07-13-2010, 07:34 AM

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

imdavidson · 07-13-2010, 08:28 AM

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.