It's one year since my last chemo treatment for uterine cancer and about a year and a half since my total hysterectomy. I've been increasingly concerned about my state of mind; my inability to concentrate, the words I forget halfway through a sentence, I'm feel like I'm just not as bright as I used to be, have wide mood swings, can't sleep, am anxious, frustrated...I thought "chemo brain" was a kind of joke; that the symptoms I have had for the last year would go away...or it was something I just needed to "get over". I stumbled onto this site after googling "chemo brain" and found the article "Chemo Brain Studies Underway" about an hour after it was posted. Talk about good fortune! I am encouraged to learn that it's not "all in my head" or something to be ashamed about. I will be talking to my doctors about this and I welcome any comments from people who are going through the same thing.
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.
Add a Comment14 Comments
I wanted to give you all a bit of an update - it has now been a little over 2 1/2 yrs since my last chemo treatment (and still no evidence of disease! woohoo!). I believe that the symptoms of my "chemo-brain" have lessened, somewhat, though they've not disappeared, by any means. Actually, I'm not really sure whether my brain fog has cleared some or if I've figured out how to better compensate for it, but I don't feel quite as confused and scared as I did at first. It still makes me sad when l forget things that I "know" I know...work is still challenging sometimes...my short-term memory completely fails me at times, but all-in-all, things are better, I think. One thing that has helped is that I write everything down now. I carry a small notebook in my purse along with a little calender on which I can keep track of appointments, moods, etc. I double-check everything I do at work or at home (whether it's balancing my checkbook or turning off the oven, it's just a way of life now). I also let the people closest to me know that my memory isn't what it once was and that they should never hesitate to remind me of things they think I might have forgotten...chances are, I have! But I think the main thing that has helped me is that I've come to accept my "new-normal" self and stop stressing about it so much. I'm much gentler with myself now, instead of beating myself up over forgetting something, I accept it and figure out what I can do to help myself remember next time. However, I really think that there should be more information made available about the possibility of these types of side-effects from chemo. I've had medical professionals actually laugh when I say "chemo-brain", thinking that I'm joking...they had never heard of such a thing. Can you believe it? Anyhow, I just wanted to pop in and say hi to my warrior-sisters - be kind to yourselves.
April 7, 2011 - 11:13amThis Comment
definatly not in your head. when i finished chemo the following month i started radiation treatments. i would drive from work to the hospital everyday and everyday my brain took brakes in intervals thoughout the day, i got lost everyday, all of a sudden i wouldnt know where i was or was going. one time driving to the hospital my brain had taken a break on me and when i came back to reality iwas just follow a car ahead of me, had no idea where i was. i was in lala land then, just went through with blind faith thinking i would just go back to normal. the frustrating part is not being warned about the way it could be, or might be, and not being prepared to face what it could be, because face it , it is a big change, and effect, its easier to know what to expect and deal with it instead of waiting to beyourself and it doesnt happen, i guess im just really fed up with doctors, not warning me or preparing me for what happened to my mind, and body, hope im not upsetting you just venting because i feel so helpless. doctors seem to want me to be seen, but not heard. any way sorry, your not crazy there are others out there with weird effects from our chemo, its our friend and our enemy.
March 18, 2011 - 10:39pmThis Comment
i had chemo and radiation 5yrs ago, i just wanted to get on with my life, forget it all but my brain has never recovered, i thought i found something here, i wish i could find someone to relate to the same problem. my doctors just dont seem to blame chemo, they make me feel like im going crazy. i cant concentrate long enough on anything, memory is horrible, i feel so stupid . i know im not crazy i wasnt like this until i had chemo, has anyone out there had long term effect on the brain? my md. blames it on depression, my onocoligist says chemo brain, they dont seem to think its serious, but it is a big concern to me, it is a major life change, it effects my day to day life and sometimes i think mabe its alztimers, it would be nice to know , diagnoses, if it is chemo brain, because half the time i just think i must be going crazy, my doc told me brain cells do not come back, well if thats so chemo kills brain cells to. so chemo could deffinately be responsable for permanate brain loss right?
March 18, 2011 - 10:27pmThis Comment
It's not in your head and you are still within the timeframe that it may mostly dissipate; I've (finally) been told that after 18 months most of the cognitive difference will be permanent. I just hit 5 years from the end of dense dose chemo for Breast Cancer. I kept hearing that it would go away at 12 months, then 18 months, then 24 months; my oncologist still states that I'm her first patient in 11years of practice that she has seen this with. After five years of struggling with treatment, side effects, getting disability, every type of rehab available (physical, cognitive, living and work), I've relaxed into my new life and try mostly to remember the tricks to keep my focused. My sadness is that I've lost five years that I can't get back -- they are a fog! However, I'm a live, my son, 19, is in college and doing well and life is more pleasure than struggle. Things that I can recommend (after much processing and thought): cancer and treatment changes everyone so know that your life cannot not be the same as before because you are not the same so talk to your soul mate, write in a journal, start a blog to explore what that means to you and your life. It's not all bad. You will discover that your brain does compensate when disrupted and new pathways mean the possibility of new talents (mine was the new ability to draw) and with your experience there maybe new interests. I believe that my creative endeavors were more therapeutic than anything else and continue to be. If you are a social person and want to remain so, sit down with your closest group of friends and explain that you are a bit different now, you don't process things (as fast or) the same way, that they mean the world to you and you need their help to explore the new you (and not expect you to be the same but they will have a hard time understanding). And, most important, if it is important for your life to have a schedule and be places on time (as your inner clock is most likely gone), learn all of the time management tricks and get your family to help to keep you focused. My son and I made it a game (on who had the worst memory). I also take Adderall that helps with multi-tasking. And, for quite a while I kept a journal of all of the "things" that I did (put knives away in my underwear drawer, milk away in the cabinet, showing up somewhere on the wrong day, wrong time or wrong place) in order to re-arrange them into humorous event; I could do a great stand up act if I could remember what to say or could think on my feet. I will admit that it took awhile to have a totally positive attitude to my life changes so my body actually decided that I needed help as I cried continuously for 2 weeks somewhere in the 12 to 18 month period. Antidepressant help keep both my physical and emotional features at bay even now so I highly suggest that if you can find 'your' support mechanism early on as I'm afraid that I may now be taking them for life.
Every event in our lives changes us so look for all of the positives and I think you'll be surprized at how many you find. Congratulations of your Survivorship and enjoy your new life.
Cheers,
August 31, 2009 - 10:48amLeslie
This Comment
I'm not sure if I am a candidate for hormone therapy, as one of my cancers is estrogen-sensitive, but I will be discussing this with my oncologist. I'll keep y'all updated. I will say, though, that since finding this site and hearing from so may wonderful people I'm feeling much more optimistic about my future.
August 21, 2009 - 11:36amTHANK YOU for envisioning and creating such a positive place! I'm telling EVERYONE I know about this site. Hugs all around!
Cecile
This Comment
Cecile, I also wrote the long one today. I hadn't read all of the comments to your original post before I wrote mine. If you are Estrogen Positive on your cancer than you shouldn't take hormone therapy however if you go to your local health or vitamin shop they can recommend some other things you can take to help alleviate the menopause symptoms and the stuff (can't find word) to help you sleep. I also recommend Resversatol (Ultra) as you mostly likely feel like you have aged all of a sudden. I am also guessing that you are taking Tamoxifen (due to hormone positive). I don't think there is medical proof (yet) but I truly believe that it contributed to my chemo brain. As soon as you are fully in Menopause (blood test) you can switch to an arremetose (sp?) inhibitor that I found a bit easier on my system but as I realised that they were anti-cancer drugs and they effected my system the same as chemo I went off those as well. You probably want to wait until 18 months out from chemo before you make any major changes so that you can see if the chemo brain and menopause symptoms dissipate on their own. Talk to you doctor and to a nutritionist as they might be able to lessen some symptoms now by switching meds or suggesting certain foods that help (sorry that I can't remember them at present). You are in my thoughts and prayers and I send smiles and much laughter you way.
August 31, 2009 - 1:44pmLeslie
This Comment
Hi Cecile! "Surgical menopause"--I love it! What a great term. Of course I don't mean that I love it literally or anything--LOL! I had the same thing and I just had a feeling that you did as well. My guess then is that you kind of are getting a double whammy here of chemo brain and possibly some unbalanced hormones. If you can work with your physician and get the hormones back where they are supposed to be, then I would hope that at least some of the symptoms you are describing lessen or go away completely. Will you please keep us posted as to what you find out? And if you would ever consider passing along EmpowHer to some of your girlfriends, I would be very honored! More big hugs are on the way!! Michelle
August 20, 2009 - 10:55pmThis Comment
I don't mind anyone asking me anything at all...I'm finding it's actually helpful to talk about it! I had a total hysterectomy: uterus, ovaries, cervix all gone in addition to about 25 lymph nodes and the fat pad (name escapes me). I believe you're right about the hormonal embalance! I went (or am going) through "surgical menopause" I have (had) papillary serous type cancer in addition to endometrial. Thanks for the link to Dr's Vliet's pamphlet & your response...Big Hugs right back at ya!
August 20, 2009 - 9:41amThis Comment
Hello and welcome to EmpowHer! I wanted to chime in and say I've also heard many people refer to "chemo brain" and I personally think there is something to it. I'm glad the comments above have helped you--that is so great and it is one of the reasons why I created a site like this one. I also noticed that you said you had a hysterectomy--do you mind if I ask you if you still have your ovaries? The reason I ask is that some of your symptoms match what I had after I had my hysterectomy and it's possible that you might be dealing with a hormonal imbalance too. You may want to go in for a total panel of blood work to see if anything is off kilter. If you go to www.herplace.com and scroll down until you find a red book, you can click on that and it will show you a list of the blood work Dr. Elizabeth Lee Vliet suggests we women all get. She is the Tucson based doctor who I credit with saving my life. You may still have your ovaries and your hormones may be just fine but I did want to mention this as a possibility since so much of what you wrote mirrored what I went through. Thank you again for your post and please let us know how you are doing. Big hugs to you, Michelle
August 19, 2009 - 11:21pmThis Comment
Thanks, all, for taking a moment to reply; your comments have energized me! Yesterday, I talked to my family about how I'm feeling, made appointments with both my oncologist and my primary care physician, called to make an appointment with a therapist and started a little "log book" of symptoms & moods to share with my doctors (before I forget what I wanted to tell them, hehe). How's that for zero to 60 in seconds flat?? Just your taking the time to respond made me feel stronger and less afraid. The poster above has really hit it on the head...when we help each other, we ALL benefit.
August 19, 2009 - 10:10amThis Comment