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Chemo Brain

missyanne's picture
missyanne
Posts: 8
Joined: Jan 2011

I am posting on both Ovarian and Uterine boards because I am a Warrior Survivor of synchronous primary.

I used the search engine but didn't get an list for "Chemo Brain", and I started getting confused going through the posts. I say confused because I am *certain* that there is a post about it somewhere, however, I cannot locate it. So ... ... ...

Brief Summary:
3/15/2010 - 3 dreams in one night that I had cancer
3/23/2010 - visit to gyn, who after exam and u/s was comfortable using the words 'cancer' and 'you have'
4/2/2010 - surgery (hyst, ooph, lynpm nodes, staging, etc) - Uterine stage 3, Ovarian stage 1
4/22/2010 - first chemo day (taxol, carboplatin)
8/5/2010 - 6th (last) chemo day
10/5/2010 - last radiation day

My first 2 doses of chemo produced Chemo Brain in extreme. I went totally aphasic. I felt like a stroke patient (except no physical deficits). I could understand what people were saying to me. I could think. I could not, however, communicate. In the beginning I couldn't make anything but noises come out. Eventually, I could get words to come out. Those words were inappropriate to the conversations and I wasn't able to state my needs or anything as I could not form sentences either. As the chemo went on, it eased up. Eventually, I would receive chemo doses and still speak and form sentences. Although I could speak, not all my words were correct. The words were generally close to the meaning I was trying to get across but they just weren't exactly accurate. An example (that we still laugh about in my circle of family and friends) is ... instead of stating "handicap tag" when referring to my parking tag, what would come out was "retarded sticker." lol

FYI - I've turned 40 yo now. :-)

I went to my surgeon/oncologist yesterday. N E D. WOO HOO!! As always, I went with my list of questions. One of these was ... What about my chemo brain? I am still having confusion and forgetfulness. He informed me that I was 6 months out and it was absolutely NOT chemo brain. I asked, "Well, then, why am I confused and forgetful still?" He said, "It's just you." WTF??!!? (I wouldn't say the words, but I do spew the initials lol). He said he couldn't do anything for me because it wasn't chemo brain anymore and it wasn't related to cancer.

I have researched by talking to cancer patients and surfing the web, etc. I have decided to believe fellow cancer patients (including my cousin-in-law, my boss at work, and others I've met along the way) who tell me that their chemo brain lasted for a year or two before clearing up. I am posting to ask, does anyone have any ideas or 'exercises' to help? I started playing scrabble (which I ABSOLUTELY!!! hate!!!!!) with my sister in Colorado via iPhone app. I have begun a physical exercise program (which I made up because all I've gotten from the 'professionals' was 'just go do' and "listen to your body"), which includes riding a stationary bike daily, walking at the local park 3-4 times a week, and dancing (which I love) as much and as often as possible (which isn't often yet lol).

Even if you don't have any ideas on how I can improve ... ... ... I really need to hear that other chemo patients don't become mentally clear in "6 weeks". My Granny (who I took care of) was Alzheimer's for many years prior to her death. I am concerned about that because of the responses doc's giving me.

Cindy Bear
Posts: 562
Joined: Jul 2009

Hi MissyAnne..this is a great place to find the answers. I am sure a lot of gals would be chiming in soon. Congrats on being NED! that is great news. I did not have cancer but my mom had uterine cancer and passed away from it. I also lost a BIL to esoph cancer this year and have a good friend that completed treatment for breast cancer a couple of years ago and is doing well. I can tell you that chemo brain, affects up to 50% of patients who undergo chemo and the effects can last up to 10 years!!! In some instances, it can be permanent but I think that's not the majority. I don't think they are really sure exactly what causes it, the chemo, the steroids , the combination of drugs but it seems to affect the memory area of the brain... I remember an article I read suggested word puzzles, crosswords, jumbles, soduku, any type of memory game. Good luck and I hope that you remain NED for many years to come
P.S. Your doctor is an idiot...

missyanne's picture
missyanne
Posts: 8
Joined: Jan 2011

I knew this was bothering me - emotionally, that is. But I didn't realize that just hearing from someone would bring me to tears. LOL. Thank you VERY much!!

P.S. My friends, who happen to be doctors, recommended him because of his surgical and pharmacological skills. They did warn me that he was an "a$$hole" (though they said the word directly). LOL Still, it's hard to be in that situation and talked to that way.

THANKX!!

Kaleena's picture
Kaleena
Posts: 1074
Joined: Nov 2009

Hello Missyanne:

Congratulations on being NED! With regard to Chemo brain, I truly believe in it. I know because I had it. Maybe not as much as you, but a couple years after I was done treating. During treatment, I really had to concentrate. I still worked but I tried to be very careful with putting down dates and such for appointments at the office.

When I had ask the medical community about chemo brain, they will tell you it doesnt exist. However, one of the nurses at the infusion told me about chemo brain and several patients there said they experienced it too. I did a lot of suduko puzzles or solatiare (which I still play) and word search. It seemed to help.

With regard to your doctor, you are telling him something you are experiencing and it seems he just fluffed you off. Not very nice.

My husband has just read somewhere that people who took chemo should take a multivitiman to help prevent Alzheimer. You may want to look into that since your Granny had it.

As you learned first hand, although you may go to a great doctor or hospital team and they may be good for surgery and treatment, but for general well being you are left out in the dust. They do not give you nutritional guidelines or other ways to help you stay healthy. Or ways to counteract the negative effects of chemo.

I gained weight on chemo and continued after I was done treating. I know I was watching what I ate and ask my physician about it. My physician response was thats because Americans eat too much. Well! He didn't ask me what I ate or what was going on.

Just keep being your own advocate. And using this site.

Happy for your NED.

Kathy

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

This is a subject that's right close to my heart (or mind). I've completed treatments July '09 and NED today still. During treatments my memory was just fine and even for the following 10 months after treatments. Seems like the last 8 months it has gotten a lot worse. I have to think before I say things as making sure I've got the correct words formed to say. I've caught myself thinking I need to go upstairs in home for something, when get to top of stairs must stop and think what I was going up for...dah! just can't remember. I now write most everything down. Crazy!

My mom was diagnosed with Alzheimer's disease 1-1.2 yrs ago and have thought about it with me as well. Generally there's no genetic link unless the patient had symptoms earlier in life (50-60 yrs). Mom was diagnosed 79 yrs.

Not done much research on it, but what the chemo girls told me, so much of it is due to stress. Well think about stress of the chemo drugs...that's one stress. Also you'll find research showing when going thru menopause we loose hormones and that leads to memory loss. Well I had a hysterectomy and went into a silent menopause (really no symptoms...I know one lucky gal to miss the night sweats) so this could be part of memory issues....think? Have you researched this route yet? If not, and find anything plse let us know...I'm curious.

Exercise? So much research on this for many way to help our bodies. I'm an avid exercise gal who used to run a lot, but don't due to back issues from radiation. I do believe it helps any type of memory...research shows good for Alzheimers as well as Kathy agreed with as well.

Fantastic you've completed treatments and are NED....girl we're both dancing the good dance...enjoy it!!!

Not sure what to say about your doctor...just not have good bed-side manners is my first thought. If he's good and you can handle the "lip service" talk, hang in there.

Best to you and keep us posted on your progress with chemo brain!!
Jan

HellieC
Posts: 434
Joined: Nov 2010

Hi
I don't care what the professionals say, these symptoms do exist and I'm suffering from them! I finished by 6th carbo/taxol chemo on 19th january 2011, having had major abdominal surgery to remove a 2nd recurrence of endo ca in Aug 2011. I find that I can't remember things, can't find the right words, get very anxious when I have to do something in a hurry or make decisions. I have always been an organised "do-er" but now I let my husband make most of the decisions, to avoid the stress! I am not imagining it and neither are the myriad of other cancer patients. who report the same symptoms!
Now, possibly, it's not the actual chemo itself that causes it, as we have all been through a lot of stress and other treatments on our cancer journeys and so pinpointing the clinical cause, when there are so many variables, is difficult. However the symptoms, whatever causes them, are real enough. I am comforted by the fact that many people say it lessens with time, but I will be speaking with my oncologist on 9th march for my CT scan results, so I will ask her what she thinks.
In the meantime, I am an avid list-maker, decision-avoider and general dullard! I could have got away with making jokes about being a "dumb blonde" but I don't have any hair yet! :-)
But I am still smiling, because I am still here and fighting!
Every good wish
Helen

Ro10's picture
Ro10
Posts: 1406
Joined: Jan 2009

I finished my chemo 8/09, and find that I still have "chemo brain". My memory is not what it used to be. My husband realizes it, too, and will start off a conversation with "do you remember .......". I have come to accept that I won't remember some things any more. I am just trying make new memories everyday.

I certainly did not experience not being able to express words while getting chemo. I think my memory problems came later after being off chemo. Like someone said, whether it was the chemo or the steroids taken, something affected the brain and thoughts.

Continue to enjoy each day. In peace and caring.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i have no doubt there is such a thing as chemo brain; long before i was diagnosed friends, and friends of friends who'd undergone chemo all complained about it. i just turned 69, and used to have a great memory, but noticed about 5 years ago, prior to dx, that i began transposing numbers when i took down phone numbers. i compensated by listening several times, so that i was sure to get it right. when i going over numbers in my phone book, i still can tend to transpose them. my memory seems to have plateaued now, and it's ok, but far from what it used to be. certainly during and for some time after chemo (can't recall for how long, maybe several months), my memory wasn't great.

one thing i haven't seen mentioned here is a certain level of preoccupation most of us with cancer have. we're just not as present as we used to be, and how could we be?--anxiety, worry, concern, physical pain, vigilance, all affect our memories, and many of us are prone to these. i don't know what specific things to do to remedy this, except to say that exercise always helps. even a half hour walk daily can improve overall well being, and it sounds like you're doing just that. i just get out my ipod, which i've finally learned to use, and listen to one of my pd james crime novels, and my walk is kinda fun. it's more fun to walk with someone, and have a breakfast/cafe as a destination, but we can't always do this. i love scrabble, so play alot, but i don't know that it helps as much as exercise. so, that would be my suggestion--keep up the exercise. i don't know if it helps to play a game you hate, frankly, but if you find it's helping........

take care,
sisterhood,
maggie

minniejan
Posts: 88
Joined: Dec 2010

Hello, I am only through one chemo treatment, and yes, I have chemo brain. And yes I worry about it because my father and his two siblings had Alzheimer's. As did his mother. I am mixing up words all the time, and just thought I would share one thing I said. Maybe this will lighten someone's day! My husband brought in the mail after work one evening, and my new Arizona Highways Magazine was in the mail, I am from the east coast, and love that area. I was excited to read it and look at the breathtaking pictures. So I picked it up from the table, turned to my husband and said, "I think I am going to take my new Mexican to bed with me." Suffice it to say, he was stunned! (Mexican in place of magazine). I have talked to many friends about it, and have decided that my crazy sayings are going to become "Janetisms". My daughter, an oncology nurse tells me that I am sharing and saying things that I never would have before too. Like things just pop out of my mouth!
MinnieJan

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

There has been some success with this program,Cogmed, though not inexpensive. Adults with various recent head trauma histories have shown some improvements as well.
I leave the 'warriorettes' to do do heir research.

http://www.cogmed.com/computer-program-“therapy-for-adhd”

Sara
P.s. Haven't tried it mysefl, though do feel word finding is problematic I am one month from six rounds of Chemo.

lkchapman's picture
lkchapman
Posts: 105
Joined: Jan 2011

Dear Missyanne,
I am a 47 year old survivor of UPSC and I definitely suffer from chemo-brain. I had relatively few problems with my memory before my 6 rounds of chemo, but I now find myself searching for the right word all the time. I have also given over the care of our finances to my husband. It has even affected my work to some extent as I am not as quick as I used to be(and I get evaluated on production speed :(. What distresses me most is that I feel a little dull; not myself as others have posted. It has gotten better to some extent since I finished my therapy in 8/09, but I really think I have plateaued and don't really expect to get any better than I am right now. I feel like I have aged 10 years since my diagnosis, both in body and mind. So don't let anyone tell you chemo brain isn't real, or that its just because you are getting older. Remember, most doctors have not been where you are.
Laura

lkchapman's picture
lkchapman
Posts: 105
Joined: Jan 2011

Dear Missyanne,
I am a 47 year old survivor of UPSC and I definitely suffer from chemo-brain. I had relatively few problems with my memory before my 6 rounds of chemo, but I now find myself searching for the right word all the time. I have also given over the care of our finances to my husband. It has even affected my work to some extent as I am not as quick as I used to be(and I get evaluated on production speed :(. What distresses me most is that I feel a little dull; not myself as others have posted. It has gotten better to some extent since I finished my therapy in 8/09, but I really think I have plateaued and don't really expect to get any better than I am right now. I feel like I have aged 10 years since my diagnosis, both in body and mind. So don't let anyone tell you chemo brain isn't real, or that its just because you are getting older. Remember, most doctors have not been where you are.
Laura

deanna14
Posts: 734
Joined: Oct 2008

I am a 41 year old survivor... I finished treatment for USPC in June 2009. I have much difficulty finding words of familiar things, names of people I have known for years. I used to be a super highway of multi-tasking... as most nurses must be. Now I am a one-way dirt road, so to speak! I do not multitask well at all and become easily overwhelmed, nervous and agitated. Not my personality prior to cancer and I have a difficult time making decisions. I had a conversation just last week with a lady I worked with. She 3 years post treatment for breast cancer and she has the same symptoms.
I went to one of our local WalMart stores the other day and when I came out with my cart, I did not know where I was. It took me a couple of minutes to get my bearings and figure out which WalMart I was at and where my car was. It really scared me, but the lady I spoke of above said she has done the same thing.
So you are not alone and you should ask that doctor if he has had cancer and been through cancer treatments. When he does, then he can tell you that your symptoms are not real!!!! Don't get me wrong, I am thankful for them and the treatments. Chemotherapy is essentially an attempt to poison cancer cells to kill them. Common sense says there is going to be collateral damage to healthy cells. My doctor told me that my bone marrow would only recover to a point and that my white blood cell count would stabalize at a new normal. Which is lower than normal for people who have not recieved chemo/radiation. Doesn't it only make sense that all of this poison has damaged a few brain cells???
So we must learn to work around our new normal in body, mind and spirit!

Hugs sister! God Bless You

missyanne's picture
missyanne
Posts: 8
Joined: Jan 2011

Thank you! Thank you!! Thank you!!!!! I sooooo appreciate all the responses. Just hearing that I’m not alone makes the massive difference!!! I have been making lists. Even as I read the messages I had to make notes. LOL. On one hand, I’m humored that I can forget so quickly—within a couple minutes. On the other hand, it is very frustrating when my mom (dad, sister, bff, etc) say, “I told you 2 weeks ago” (or such) and I truly have no recognition of the conversation. Still, because I recognize that I am having these difficulties, I choose to believe those that I love and have trusted during my life. I choose to try and laugh every chance I get—especially at myself. I choose to believe that whether or not I get better, God has the vision of His plan and purpose for me—even though it is my hope that I improve LOL.

@Sara—Thankx for the link, and yes, you are right that is way out of my price range. Even if I were working again, I couldn’t afford it.

@MinnieJan—ROFL!!! In my family, that would be cause for frequent joking about your multitude of boyfriends (in jest, of course). Thankx for sharing. I didn’t that burst of laughter!! proving I’m not the only one doing that sort of thing. Lol My circle of loved ones also remind me that I have new behaviors that I didn’t do before. One is that I belch whenever then need arises, wherever that might me. I always considered that rude in the past but now I prioritize not wanting to have gas pain. Apparently, I’ve been told, that if someone says something to me about it, I tell them that since I’m been belching I don’t fart very often anymore. ROFL!!! I’ll have to start paying attention for that as I don’t recall saying anything so outrageous!!! LMBO!!

@Laura, Maggie, Ro10, Kathy and Jan—Thankx to ya’ll, my Warrior Survivor Sistahs

@Helen—My thoughts and prayers will be with you! Stay Strong my Warrior Sistah!!!

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Yes, you are definitely not alone :)

Definitely saw it effect my short term memory...seems much better now six months after treatment....

Laurie

Northwoodsgirl
Posts: 201
Joined: Oct 2009

OK so you were put into abrupt menopause so that can affect your brain too. I also had chemo brain. Think about all that heavy platinum circulating through your system. It must pass the blood brain barrier. I don't know that we are ever as sharp as before we were given all the toxic substances. You certainly suffered more than most of us. I pray that you will get sharper with the passage of time. Check out Luminosity website where you can play cognitive building games online.
Lori

nempark
Posts: 592
Joined: Apr 2010

It's only when you get sick then you really know how Doctors just do their part and left the rest up to you. Of course there is chemo brain. I am 15 months NED (that is 15 months after Surgery) and talk about chemo brain. I was just checking my bank account on line and lo and behold there are three checks that I did not sign or date. I have many other stories but too long to mention. At one point I was afraid to speak to people for fear I would say the wrong word. I did feel sometimes that my words were jumbled. Yes, chemo brain does exist. There were times when I attempted to explain a situation and could not get to the point. I must mention, I am beginning to see a difference now. much better. I am a scrabble and crossword freak. But I have noticed that I am better on paper than speaking. What a joke! What an illness! We will all get better, We will all remain NED and those who are in treatment will soon be NED. MY sincerest love and best wishes to all the warriors. June

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