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Can We Talk Chemo Brain?

Rocquie's picture
Rocquie
Posts: 605
Joined: Mar 2013

Yesterday, I had a Rituxan maintenance infusion and talked to my Doctor, AGAIN, about my brain. He asked me some questions about last night, yesterday, last week, etc. After I answered the questions, he pointed out that I could remember these things. That was when I realized he was "testing" my memory. I told him I wasn't that worried about remembering yesterday, yesterday is over and I have moved on. I am frustrated about remembering what I am doing NOW.

Several times a day, I ask myself, aloud, "What am I doing?" or tell myself, "Focus. Focus".  I start to write a word I have know how to spell forever and suddenly don't know how. I walk to another room and wonder why.  I will be mid sentence and forget the word I am about to say. Multi-tasking? Forget it. It is very tiring and draining. And it causes me considerable anxiety.

A search at this site yields me nothing really but joking about the subject. And I have joked about it myself. Chemonesia!

I would really like to hear how others cope with chemo brain and also some validation that this is real. It is hard to talk to my doctor about my brain when my brain doesn't work right!

Anyone?

Thanks,

Rocquie

 

 

 

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Hi "Clarise" erh uhh "Rocquie" ;).  I just re-read your profile and looks like you finished chemo on or before Feb. 2013?  I think many here can relate to "chemo brain".  My experience was forgetting words or having a hard time pulling them up in the mental rolodex.  Often my mind would come up with words that would start with the same letter but it wasn't the word I wanted.  I still experience this but not as bad/often.  Most of it for me has been in verbal abilities and memory though I can't do math in my head as well as I used to.  I also have noticed recently I can watch a movie and forget chunks of it within 2 weeks.  Things just don't seem to stay fresh in my mind as they used to.

Chemo brain definitely exists and from what I recall (trusting my memory here), it's often temporary.  I think I've seen improvement on some things.  I suspect there may be some psychological aspects to a small part because going through what we have is pretty traumatic.  We are hit with sudden lifestyle changes (out of our normal routines) and this kind of throws things out of whack because our "structure" changes.  Anxiety and fear can cause some of these things I think.  I'll do some research online and see what I can find.

I think it will get better.  You are definitely not alone in this.  Stay warm - this "Polar Vortex" is frostbiting my a$$ ;).

Jim

 

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

I found this at mayc clinic though it is fairly generic:

http://www.mayoclinic.org/diseases-conditions/chemo-brain/basics/definition/CON-20033864

Generally, not enough is known a about chemo brain and it states more study needs to be done.  There's lots of stuff out there and like many things on the web, you need to take it with a grain of salt.  One suggestion is to work with puzzles and other games to help the brain.  Coping mechanisms are also suggested.

 

Rocquie's picture
Rocquie
Posts: 605
Joined: Mar 2013

Yes, I was pronounced in remission in Feb, 2013, but I had chemo 2 more times after that. I can't remember why?! But I have been finished with chemo for about 9 months. . .unless you count the rituxan I am still on.

Yes, I know the disease itself and the treatment of it play a part, along with things like low blood counts (which I had a terrible time with), infection and fever, which I was hospitalized 3 times for. And yes, the mental and emotional trauma. It is really a wonder I do as well as I do.

Thank you for caring. And yes, this freeze is really something! Many thousands of people in our area are without electricity and I am very thankful for ours. That new electric blanket we got for Christmas felt so good last night! 

 

tall floridian's picture
tall floridian
Posts: 95
Joined: Dec 2011

Rocquie: I can relate to your post well-I wonder if turning 72 years old or having 8 rounds of chemo have affected my thought process. One disturbing fact is that I get what I call "DRIFT" finding my thoughts kind of drifting away from me, especially when driving- I have to keep telling myself to focus,keep looking at objects like signs,trees, houses,to remain alert. I went a year and a half without driving and still don't take any long distance trips by auto. I let my wife drive those distant trips and do find myself drifting as we ride. I wonder if anyone else has experienced this situation? I know that chemo has many side effects and wonder if this is one of them. My memory seems good but I do find myself searching for words when describing something I have just seen on TV or read in the newspaper. All in all-just being in remission from 4th stage lymphoma is reason enough to thank God for His healing and the ability to see my granddaughter grow up before my eyes. It's been almost two years in remission now-only have quarterly oncologist blood tests to keep a check on my progress.

Rocquie's picture
Rocquie
Posts: 605
Joined: Mar 2013

Um, I think I got your name right? Drift is a good word. I usually say stunned or spaced out. Like you, I don't have memory problems, just poor concentration and trouble staying focused. Please don't talk to me while I am doing something or I suddenly get lost. Yes, I am very thankful for my gift of remission. I too, have a beautiful granddaughter to grow up with. Thanks for your reply.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1445
Joined: May 2012

Rocquie,

All of the scholarly articles seem to agree that chemo brain or chemo fog are plenty real.  I feel I had (have) a pretty severe case, but I have always been so forgetful and absent-minded that it is hard (impossible) to tell what parts were brought on by chemo and what parts by other factors ( I forgot my name on the first day of class in fifth grade, for instance, such that I could not write it on the board).  General sickness, messed-up blood chemistry, and other non-chemo drugs used during treatment must undoubtedly all play a part in cognative imparement.

The brain is so complex that most doctors avoid psychological issues, even on problems like depression. If they do anything, they will write a perscription for the default drug, and that will be the end of their attention.

There are a lot of articles on chemo brain available at the professional sites, like WebMD, Johns Hopkins, Mayo Clinic, etc. They are usually intelligible to non-medical-professionals.  What I have read consistently indicates that chemo fog has these general characteristics:

1. It is a real condition; 2. It is difficult to diagnose or assess; 3 It is mostly untreatable (some theorize that this or that vitiman, etc will help); 4. Most oncologists spend little or no time addressing it in their patients; 5. It usually diminishes or gets better over time, which can vary from months to years.

Chemo fog clinically is therefore very similiar to neuropathy, which I had a severe case of, and learned a lot about in a later clinical trial: Some get it, and some don't; there are few treatments, and some work sometimes, and at other times don't; it usually passes over time, but sometimes does not.

It is a lot like the luck of the draw, or throwing darts at a board.

max

Rocquie's picture
Rocquie
Posts: 605
Joined: Mar 2013

It is hard for me to imagine you as always being forgetful and absent-minded, you always seem so "together" in your replies. I know what you mean about doctors avoiding addressing brain issues. Yesterday, mine referred me to a neurologist. Frankly, I don't think it will help anything but I will go. I also had a severe case of peripheral neuropathy which has resolved, so I hope this brain of mine gets straighened out also.

Thank you for your reply.

struggling
Posts: 1
Joined: Jan 2014

Rocquie, you are not alone!

I had chemo/radiation in 2012 for Stage IV NHL. When I went back to work after completing chemo but getting radiation, I noticed right away trouble with word finding, memory, and sometimes I would say things, that in my mind, I knew what I wanted to say, but it just didn't come out right. I initially felt like I was crazy until a friend of mine told me about chemo brain and could see I was having problems. I finished treatment in Aug 2012 and so far everything points to full remission so I feel truly blessed, but these cognitive issues have not gotten any better and are affecting me at work. My job has changed and much more stressful now. I was recently written up for missing some things and afraid this will happen again. I feel embarrassed and humiliated. My manager is supportive and encouraged me to request an accommodation from HR due to these ongoing cognitive issues, which will protect my job for now. I have done this and have an appt with my oncologist next week. I don't even know where to start with what would help me at work. Has anyone else had problems with there job. 

Any suggestions? 

STRUGGLING 

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi Rocquie,

Talk about remembering things, just a couple of months ago don't know where because I can't remember, a person asked me my name and I sware to you that I couldn't remember what my name was!!! I was very embarrassed and got all red, that person must of thought I was a real nut case :D 

I haven't even told my Onc about it because he usually will just not give a lot of attention to things like this...

take care of yourself and just keep reminding yourself to focus, what I do for myself is to put alarms and write things down that way I won't forget as much..hopefully this will help you some! (((Hugs)))

Sincerely,

Liz

Rocquie's picture
Rocquie
Posts: 605
Joined: Mar 2013

Thank goodness I haven't forgotten my name yet. I don't think. Smile Thankfully, I am in the habit of keeping a detailed day planner from my working days. Also, I start each morning with some time making a list for the day. I write everything down. And those things do help. But when I start actually doing the things on the list, I have to concentrate harder than I did before. Hugs back to you! 

Rocquie's picture
Rocquie
Posts: 605
Joined: Mar 2013

I am so sorry to hear about your trouble at work. I know there is no way that I could do my former job right now. I sure hope you can find the help you need through your HR department. Good luck to you.

 

allmost60's picture
allmost60
Posts: 3185
Joined: Jul 2010

Hi Rocquie,

  Last year we had a gas leak so I had to call the gas company to send someone out.When the lady asked my address, I completely drew a blank. I asked her to hold on a minute and then ran to the front door to look at the address on the house. Also forget all kinds of stuff around the house..what am I looking for, why did I come in this room, etc, etc. I finished my first line chemo in 2010, and finished my 2 years Rituxan last February. The little forgetful things don't bother me, but forgetting my address really threw me for a loop. I also forget huge chunks of movies as Jim does, but I find that beneficial because I can watch them over and over. Laughing Well maybe not over and over!  Seriously though,chemo brain is something real and can be very disturbing. My doctor keeps saying it will all get better, just takes time, he just won't say how much time! Let us know what you find out after seeing the Neurologist. Hang in there and keep writing stuff down...I do it for everything. Much love...Sue

(FNHL-stg3-grd2-typA-Dx 6/10-age 63)

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Hi Sue!  Good to see you, Liz and others post again!  I wanted to add one thing to list of Chemo Brain related issues.  I mentioned verbal skills being impacted.

I sometimes easily "miscode" words when I read.  Now some of it may be from not wearing reading glasses, but sometimes I'll misinterpret words when I'm reading.  I think everyone does that on rare occasion but this is more than that.  I can't remember a good example right now but it seems the words may be spelled similarly or if you rearrange the letters slightly (maybe leaving out a letter or two) my brain interprets them as the wrong word.  Has anyone else had this type of experience?  I'm just curious.

Rocquie's picture
Rocquie
Posts: 605
Joined: Mar 2013

Yes, I do that too. I recently told my husband that I was somewhat dyslexic. (Had a heck of a time spelling that word and had to look it up). I also transpose numbers which is one of the reasons I know I couldn't do my former job--as an accountant.

allmost60's picture
allmost60
Posts: 3185
Joined: Jul 2010

Hi Jim,

  No, I don't see the words differently than written, but I do find if I put my book down and don't go back to reading it right away, I have to re-read a few pages I've alreay read to remember whats going on. If I don't pick the book up for more than a few days, then I have to re-read a whole chapter. Very strange. Last week I got half way through my book when it dawned on me that I had already read the book. Now thats annoying. Guess we just need to be patient and remember these things may take more time. Hope you had a good Christmas. Love...Sue 

Rocquie's picture
Rocquie
Posts: 605
Joined: Mar 2013

Well, I have forgotten my zip code but not the house number. . .yet. When I am home alone all those little things don't bother me as much either, not to mention no one is around to distract me. When my Mother visited for 2 weeks at Thanksgiving, I thought I was going to have a nervous breakdown. She doesn't seem to believe me when I tell her I have to really concentrate to complete certain tasks--like cooking her dinner. She will not stop talking to me. I would be trying to read a recipe and she would be talking and in my way in the kitchen. If she was my granddaughter, I'd tell her to go play in the other room or put on a movie for her. But no, she wants to "help". Arrgh.

I really am so grateful for so many things in my life but this condition makes it hard for me to be with others. (Thank goodness my husband understands and respects my needs and limitations).

Thank you for your reply. I will give a report after seeing the neurologist.

Much love to you too. . .

tall floridian's picture
tall floridian
Posts: 95
Joined: Dec 2011

Rocquie: Thanksgiving and Christmas is my time to shine-I get to cook my favorite holiday meals much slower than before but not bad for a "chemo headed" 72 year old guy. I do have to concentrate much more than before I was on chemo but thank God the food came out cooked and everyone enjoyed it. I still walk into a room and wonder why I'm there then it pops in my head why I went in there in the first place. (ha ha) I think we all are different in the chemo brain area-some with more difficulties than others. I find that I concentrate more when I do visual exercizes on the computer like going into chat rooms and playing music and chating with friends there. It's very stimulating and fun and at the same time helps my concentration alot. I have to watch that the music doesn't put me adrift too lol. I also have a sweepstakes hobby that keeps me very busy both online and snail mail. These kind of activities I believe stimulate the brain and are good for people like us. Plus when my 3 year old granddaughter comes to my house I get total exercize-especially the "read grandpa" part (ha ha) We learn to live with our shortcomings and adjust to eveyday living- I'm glad that I'm retired-I don't think I would survive a job at this point (hee hee) My wife has lived with my condition 24/7 since 2010 so understands my shortcomings and has learned to laugh about them. When I find myself in a room wondering why I'm there and my wife walks in we both smile and say "chemo head" and have a great big laugh.

Rocquie's picture
Rocquie
Posts: 605
Joined: Mar 2013

I love cooking too. And I have a food blog which is now in its 6th year and has over 450 recipes which I made and photographed. My husband gave me a new camera, a professional one, for Christmas. Very exciting! I have signed up for a 6 weeks photography class at our local Community College. Back in the fall, I took a 6 week cake decorating class and that was fun. I do try to keep my mind and soul busy and stimulated. And we keep our 4-year-old granddaughter every other weekend.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I WAS GOIN TO YTPE SOMETHING HERE, BUTT I GOT UPP TO GOE TO THE CITCHEN AND FORGETTED WHAT I WAS GOIN TO RIGHT. SURE GLAD THAT WHAT CHA MA CALL IT STUFF, OH YEA, KEMO BRANE NEVER AFFECTED ME NONE. I STILL SPELL GOODER AND NEVER TRANSPORT WORSD, NUMBRES OR NOTHING. I AMM STILL 010%.... I MEAN 100%. IT MITE AFFECT ME ONE DAY, BUTT I AMM STILL AT THE TOP OF MY GAIM NOW. EVER ONCE IN A WHILE I GO TO THE BAHTROOM AND FORGETTED WHY I WENT IN THEIR TO DO. HANG IN THEIR PEOPLES YOU WILL BE AS GOODER AS ME ONE DYA.  JHON

Rocquie's picture
Rocquie
Posts: 605
Joined: Mar 2013

Smile  I'm so glad to hear you haven't been affected by chemo brain Smile

Thanks for posting. . .you made my day!

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Geart to see you spot, Jhon.  Woke pu in the dimmle of the night - porbly cause I heard that bowstring being darwn.

Sguh 

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I can relate to everything said here about Chemo Brain. I transpose letters all the time. I have to re-read everything I post before posting or it may not make any sense. I can not do math any longer in my head. Something I used to be so good at doing. I use a calculator and honestly I mess that up sometimes too. I find myself searching for words all the time. Most of the time they are just simple words. I go to say things and the wrong word comes out. It's like my brain is connected to the wrong end at times. Short term memory is gone. Haven't forgot my name and still know how to get home. Damn, I hope it never gets that bad, but who knows where this can all lead in the long term. Wonder if it's the chemo or maybe the Rituxan. Probably a combo of both. John

  PS:( Depression thread) Jim, I hope you don't throw out any of those crayons and markers out by mistake while taking the garbage out. You'd be in a world of S#%T then. LOL

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi John!!!

Very nice to hear from you... Glad to know that you still remember your name hahaha! Well, that happened to me once and it sort of throws you off like Sue said...an extremely weird sensation like you're lost or something. I just hope it doesn't happen to me anymore and I'm trying very hard to concentrate on everything I do. And just like Rocquie don't talk to me while I'm doing something because I will either screw it up or won't listen to a word your saying hehehe!!! Man man man I think we're screwed lol...but you know what I'll take this memory loss instead of the cancer (Any day)! take care and hope your Christmas and New Year were awesome! (((Hugs)))

Sincerely,

Liz

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Liz,

 I know I do not post that often anymore, but I do check out the post daily. Hope you are doing well. Take care, John

embracinghope
Posts: 3
Joined: Jan 2014

Hi...I'm new here..but just had to add my input on chemo brain...a little background...used to be an oncology nurse...I stopped to raise my kids...when youngest was 16 I got a job with learning rx as a brain trainer...we dealt ....with all kinds of adults and kids...some with major issues in reading...and math...some who wanted an edge for life and school...at any rate...it was fun going to work...playing brain games for a job...it sharpened me up...while working here I was diagnosed with nhl....I was concerned about chemo brain...when I asked hematologist about it...she said...with tongue in cheek...oh that doesn't exist...I found out real fast otherwise...had many of symptoms u all describe...in fact became so bad that I didn't drive for a year...after a couple of close calls...I felt like I had a fog induced add...when I could make it to the store...I frequently stood there and bawled...at my lack of processing...in the beginning I could only process to buy one or two meals of groceries at a time...much more was way too overwhelming....couldn't process reading...would read same thing over and over...and forget math...wasn't good...but I had kind of an epiphany about this this past week...its been five years since chemo...they r watching something in my neck...hoping I'm not out of remission...I went in for my 5 year all clear....and it wasn't...combine that with being an only child...just losing my dad to liver cancer....dealing with my mom having a stroke...and dementia...and my son finishing up a one year residential treatment program....equals....major stress...over the top.....the other day I walked into the store...something felt oddly familiar...I couldn't process...couldn't shop...cried...brain fog...I realized that I think chemo brain has as much to do with stress...as the chemo...it had been 5 years since my last chemo...but it was like I stepped back in time...and who isn't greatly stressed with this diagnosis.?....it was interesting to me...and all that brain training background did not seem to make a difference.it is what it is...what did help...was time...gradually it all lifted...made improvements daily...until last week...but its not lingering...so maybe for some of us...actively decreasing stress whether by prescription or other means will help the brain fog......

embracinghope
Posts: 3
Joined: Jan 2014

One more thing..funny...cant remember movies...happy as a clam...they r all new again...my family despairs of that one...but I keep entertained at a very low cost...lol

tall floridian's picture
tall floridian
Posts: 95
Joined: Dec 2011

I believe that stress plays a big part in our chemo brains. When things are running smoothly I tend to relax and the symptoms are less but when stress rises I can feel the drift feeling coming on and have to put up my defenses quickly-especially while driving. So the less stress the less drift becomes a reality in my day to day living. I'm retired so it's easier for me when I feel this coming on to lie down and relax and even take a nap. I also find taking deep breaths help relieve stress also and I use a wrist band at sleep time to help give me a deep sleep. Eating healthy too eases stress as my body can function better rather than too much sugar and fat going in instead of fresh fruits and vegetables like I know is best for my system. Very important to me is my faith-praying is very very relaxing and meaningful to me. Knowing that God's in control of everything in my life gives me hope and comfort. I hope this helps you guys a little in understanding how to cope with chemo brain.

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