chemobrain?

manna1qd
manna1qd Member Posts: 46
I am a six year survivor of breast cancer, and four rounds of andriamycin/cytoxan. I also experienced surgical menopause five months after I finished the chemo. I am wondering if anyone is dealing with unusual forgetfulness. I will appreciate anyone who is willing to share their current experiences. I am not sure if I am "normal" or if I need to be evaluated for this.
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Comments

  • Racht
    Racht Member Posts: 38
    Hi, I am a lymphoma survivor. I had adriamycin and 3 other drugs known for this and other side affects. I have struggled with this very thing myself now for over a year (mine started after treatment). Drs don't really recognize this as a legit side affect (to save you the trouble of bringing it up and being stared at like a deer in the headlights)
    personally I have found regular chiropractic adjustments (to keep the nervous system running as efficiently as possible) and taking a pharmaceutical grade fish oil has helped. Other than that- it is a whole new world for me and I'm learning to adjust. I won't waste time bringing up to drs anymore. That's just me though. I wish you well and I hope things improve to your satisfaction.
  • davidsonxx
    davidsonxx Member Posts: 134
    I had FOLFOX (5FU, leucovorin and oxaliplatin) for rectal cancer. I also had a hysterectomy along with my colon resection to remove the tumor. I had chemobrain really bad. Once I stopped the chemo it got a lot better but I still forget things. I don't know if it is from menopause or left over from the chemo. I am almost a year post chemo and still have problems. I used to have a really good memory and never had to write things down to remember them. Now if I don't write it down I sometimes forget it. It doesn't happen all the time but often enough that I try to write everything down now. It's frustrating.
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Racht said:

    Hi, I am a lymphoma survivor. I had adriamycin and 3 other drugs known for this and other side affects. I have struggled with this very thing myself now for over a year (mine started after treatment). Drs don't really recognize this as a legit side affect (to save you the trouble of bringing it up and being stared at like a deer in the headlights)
    personally I have found regular chiropractic adjustments (to keep the nervous system running as efficiently as possible) and taking a pharmaceutical grade fish oil has helped. Other than that- it is a whole new world for me and I'm learning to adjust. I won't waste time bringing up to drs anymore. That's just me though. I wish you well and I hope things improve to your satisfaction.

    I'm sorry to hear your doctors don't recognize chemobrain as a side affect of chemos. I have found my experience (here in Canada) to be the exact opposite. Before I started my chemo treatments a year ago, it was actually my oncologist who brought it up as part of the discussion we had on the chemos (5FU,oxaliplatin and an oral one that, yes, I've forgotten for the moment and would have to go look it up).

    Chemobrain is a known side affect of chemo. Not necessarily with all chemos and not everyone experiences it. I guess that is why they haven't quite narrowed it down because not everyone experiences it and those that do, experience it to varying degrees. Likewise, when you get over it it is not an overnight thing... it just seems that gradually you aren't forgetting things the way you did at it's worse. Even for those of us who have experienced it, it's kind of hard to explain it.

    Then, add menopause to the mix, and it's really hard to tell what is menopause related and what is chemo related. I had a hysterectomy 6 years before I was diagnosed with colon cancer, so was already in menopause when I started my chemo. And no, the memory loss caused by the hysterectomy had not disappeared yet by the time the chemo started.

    So, I guess it's the old saying, did the chicken come before the egg theory? In my case, did I already have menopause-related memory loss and the chemo just made it worse, or did the chemo bring on more memory loss in the form of chemobrain?

    Either way, my doctors were very sympathetic to my frustrations and said to just wait and see... it should get better once the chemo finished... and I think they are right. I don't feel as frustrated now, even though I still do have bouts of not remembering.
  • blueroses
    blueroses Member Posts: 524
    adriamycin issues and chemo brain too
    I am an 18 year surivivor of nhl through an autolous bone marrow transplant with total body radiation. My chemo brain has gotten worse over the years and add to that confusion, and other cognitive changes, memory - yikes, pretty bad. I leave out whole important points in conversations and often therefore give people the wrong impressions because I haven't given them all the info, very frustrating, then I have to go back and tell them what happened then I just feel stupid. It's awful. Whether adriamycin had something to do with this cognitive hastle I don't know but I wouldnt be surprised.

    However what I do know for sure is that adriamycin is a big cause of heart damage, or can be. I developed congestive heart failure during my BMT and before that noticed new irregular heart beats. 18 years later I have been now fitted with an emergency pacemaker after almost dieing of extreme atrial fibrulation and now also am on several drugs to also regulate beat. I still get head rushes from hell and am close to fainting on many occassions and have spent many evenings in an ambulance and at the heart institute. Just make sure that your heart is monitored on a regular basis and if you feel it skipping beats immediately tell your doctor and have them refer you to a good cardiologist. I have two cardiologists I found myself, one being an electrophisiologist who specializes in all things electric in the heart. Depending on your condition you may or may not need an electro cardiologist. Just be aware adriamycin is known for this side effect, its called adriamycin induced cardiomyopathy. Say that fast with a bunch of grapes in your mouth. hahaha.

    Take care.
  • Dreamdove
    Dreamdove Member Posts: 175
    chemo dementia
    I am 15* months cancer free (ovarian) but I still am not the same and no one really understands this except those who have cancer. Thoughts go out of my head fast, I'm forgetful, and don't drive as well as I used to. Yet I am able to have a basically normal life and I have a job. I read somewhere people can have something called "chemo dementia." I believe it! My teenaged daughter doesn't understand this. She thinks I'm just getting old. How do you like that? I'd like to do some research on this. I cope by writing alot of things down. I even space out more often. I'm 52, not all that old.
  • slickwilly
    slickwilly Member Posts: 334
    Dreamdove said:

    chemo dementia
    I am 15* months cancer free (ovarian) but I still am not the same and no one really understands this except those who have cancer. Thoughts go out of my head fast, I'm forgetful, and don't drive as well as I used to. Yet I am able to have a basically normal life and I have a job. I read somewhere people can have something called "chemo dementia." I believe it! My teenaged daughter doesn't understand this. She thinks I'm just getting old. How do you like that? I'd like to do some research on this. I cope by writing alot of things down. I even space out more often. I'm 52, not all that old.

    chemo brain
    Dreamdove. I am 53 and my brain says I am 20. Whenever I screw up my daughters just say "chemo brain". Like dropping speghetti all over the floor last night or having the spoon of sauce fly across the kitchen. And my dog sure hates getting left out in the rain. But Chemo brain or whatever you want to call it exists. 5 years out I can't learn as fast and things still frustrate me. Reading a book is hard when you can't remember the characters. I was once so bad I could not multi task at all so I have come a long ways. From what I understand the University of Michigan is now doing studies on women and children about this subject. Some foreign countries are also working on it. Over the years it was thought that cancer patients were just not active or using their brains. Or that all the stress was causing our symptoms. I think we all know that is not the case. I was involved in community projects and kept using my brain. Yet when I returned to work I could not multi task. It took months of crossword puzzles to get my brain working and thinking properly. Now if I could just remember when I am cooking. Today it was burnt garlic toast. My wife has a firm belief that I will someday burn the house down and she might be right. But I keep trying to have some sort of life rather than sitting on the couch. And I will keep trying to do things I should not be doing because the option is feeling worthless and I hate that. Having a sense of humor helps. I told my dog to get his toy. I tripped over his toy after he threw it under my feet. I didn't know he already had it! My wife and daughter were laughing so hard they fell off the couch. At least I am amusing. Slickwilly
  • blueroses
    blueroses Member Posts: 524
    Dreamdove said:

    chemo dementia
    I am 15* months cancer free (ovarian) but I still am not the same and no one really understands this except those who have cancer. Thoughts go out of my head fast, I'm forgetful, and don't drive as well as I used to. Yet I am able to have a basically normal life and I have a job. I read somewhere people can have something called "chemo dementia." I believe it! My teenaged daughter doesn't understand this. She thinks I'm just getting old. How do you like that? I'd like to do some research on this. I cope by writing alot of things down. I even space out more often. I'm 52, not all that old.

    you arent alone
    Many survivors talk about 'chemo brain', I have it and it now isn't only forgetting, it is creeping into not being able to explain myself verbally, have to write it down. I have to write out symptoms and things to doctors now as simple notes for myself to remind me when I am in the appointments don't cut it anymore. I also leave out key points in conversations and that can cause problems, leaving people I am talking to with wrong impressions as I realize later I have left key points out. Words appear even in type that when I go back to check it all I am shocked to see there, it's just weird. Anywho I could go on and on but YOU AREN'T ALONE. Tell your daughter to do her homework online about many many others who have this side effect after cancer treatment. Slowly the medical establishment is coming to terms with this. SLOWLY. I am a 20 year survivor of non hodgkins lymphoma.
  • blueroses
    blueroses Member Posts: 524

    chemo brain
    Dreamdove. I am 53 and my brain says I am 20. Whenever I screw up my daughters just say "chemo brain". Like dropping speghetti all over the floor last night or having the spoon of sauce fly across the kitchen. And my dog sure hates getting left out in the rain. But Chemo brain or whatever you want to call it exists. 5 years out I can't learn as fast and things still frustrate me. Reading a book is hard when you can't remember the characters. I was once so bad I could not multi task at all so I have come a long ways. From what I understand the University of Michigan is now doing studies on women and children about this subject. Some foreign countries are also working on it. Over the years it was thought that cancer patients were just not active or using their brains. Or that all the stress was causing our symptoms. I think we all know that is not the case. I was involved in community projects and kept using my brain. Yet when I returned to work I could not multi task. It took months of crossword puzzles to get my brain working and thinking properly. Now if I could just remember when I am cooking. Today it was burnt garlic toast. My wife has a firm belief that I will someday burn the house down and she might be right. But I keep trying to have some sort of life rather than sitting on the couch. And I will keep trying to do things I should not be doing because the option is feeling worthless and I hate that. Having a sense of humor helps. I told my dog to get his toy. I tripped over his toy after he threw it under my feet. I didn't know he already had it! My wife and daughter were laughing so hard they fell off the couch. At least I am amusing. Slickwilly

    Humour is crutial
    I am 58 and also suffer from chemo brain and my story is scattered through this section of csn so I won't bore you with details. Just wanted to say that without a sense of humour, people have a much more difficult road for sure. Keep up the Yuks, better than most pills in a bottle !!!!!!!!!!!!!!!!!!!!!!!!!!!!
  • blueroses
    blueroses Member Posts: 524
    20 year survivor of nhl
    I have had chemo brain for sometime now and it seems to be getting worse, I have written about it in here before. It is creeping into not only forgetfulness but confusion and excluding key points in verbal conversation. I am going to have some memory tests soon to see where this thing is going. You mentioned adriamycin in your blog. Have you had any heart flutters or anything like that? Adriamycin caused heart damage for me but don't jump to any conclusions about your adriamycin since I had the grand daddy of all cancer treatments, a bone marrow transplant but after the first chemo session a year and half before the transplant I started to notice skipped beats and this must have been the start of the damage. Adriamycin was used then too. Just a caution to watch your heart. Hopefully you are being monitored for heart issues.
  • beachgypsy
    beachgypsy Member Posts: 7
    chemobrain
    I am a survivor of hodgkins lymphoma and just started experiencing chemobrain in the past year. never even heard of it till 2 days ago. I have been cancer free for 7 and a half years and did not know that side effects could show up so long after the fact. It started right after I started taking the pill CHANTIX to quit smoking. I think that is what triggered it. Not sure it's getting any better but I am adjusting to it. Seems I have a new side effect every month. I deal with them as best I can. They're like a daily reminder of everything I've been through and just how short life really is. Doing what ever I can to enjoy each new day I am blessed with, although at times I feel as though I have to force myself. And at the end of the day I'm glad I did. There are much more important things in life than sitting around worring about the things I cannot control.
  • artizan
    artizan Member Posts: 59
    chemo brain is real
    I am a 54 year old, 9 year breast cancer survior. I had 4 rounds of A/C and even now I have trouble with chemo brain. As I get older I suppose menopause becomes part of the mix but I know that specifically I have trouble remembering number and date related things. I cannot keep numbers in my head. I am still good at math and can do much of that in my head but if I count something and have to remember that number, I'm in trouble. Paper and pencil have become my best friends.
    Sheila
  • Dreamdove
    Dreamdove Member Posts: 175
    artizan said:

    chemo brain is real
    I am a 54 year old, 9 year breast cancer survior. I had 4 rounds of A/C and even now I have trouble with chemo brain. As I get older I suppose menopause becomes part of the mix but I know that specifically I have trouble remembering number and date related things. I cannot keep numbers in my head. I am still good at math and can do much of that in my head but if I count something and have to remember that number, I'm in trouble. Paper and pencil have become my best friends.
    Sheila

    I was always a scatterbrain but never like this
    artizan, I am an 18-month ovarian cancer survivor and still have chemo-brain. I don't know if I will ever be the same. I have to function at my job and sometimes I must look to others like a total scatterbrain or idiot. I don't think anyone not having gone thru chemotherapy would understand this. They just think it's senility. But I just turned 53! Even as I am writing this I have to go back and fill in a missing word or two. Yes, I have notepads and pens around. At least I haven't had blind spots in a while. A couple of times I was walking, biking or driving and a car was coming and I didn't see it. It wasn't there when I turned my head and looked! I'm just lucky to be alive sitting here at the keyboard. I wish there was some sort of disability for this. I have a 14-year old to support and it isn't getting any easier. I hate to think if I had to go thru chemo again. Then ALL my brain cells would be gone. I am just kidding but you never know.......
  • tasha_111
    tasha_111 Member Posts: 2,072
    Dreamdove said:

    I was always a scatterbrain but never like this
    artizan, I am an 18-month ovarian cancer survivor and still have chemo-brain. I don't know if I will ever be the same. I have to function at my job and sometimes I must look to others like a total scatterbrain or idiot. I don't think anyone not having gone thru chemotherapy would understand this. They just think it's senility. But I just turned 53! Even as I am writing this I have to go back and fill in a missing word or two. Yes, I have notepads and pens around. At least I haven't had blind spots in a while. A couple of times I was walking, biking or driving and a car was coming and I didn't see it. It wasn't there when I turned my head and looked! I'm just lucky to be alive sitting here at the keyboard. I wish there was some sort of disability for this. I have a 14-year old to support and it isn't getting any easier. I hate to think if I had to go thru chemo again. Then ALL my brain cells would be gone. I am just kidding but you never know.......

    chemo brain
    Why don't they tell us about this? My cancer society peer support worker told me about this, Thank God She Did, or I would have thought I was going completely mad! I can't DO money anymore...........I count 20$s as 10$s and I totally screw up in the shops all the time, it is so embarassing. I have other days where I am so dizzy I dare'nt even walk to the car, or drive it. I emigrated here to Ontario Canada from england 6 years ago, I still get in the wrong side of the car and wonder who pinched the steering wheel, I go to change gear and open the door and fall out ! I can deal with roundabouts BUT these all way stops?......Heck I get out of my car and direct traffic until it has all gone then leap in and take off at 90mph! Maybe this isn't chemo brain....Just a blond moment.
  • artizan
    artizan Member Posts: 59
    Dreamdove said:

    I was always a scatterbrain but never like this
    artizan, I am an 18-month ovarian cancer survivor and still have chemo-brain. I don't know if I will ever be the same. I have to function at my job and sometimes I must look to others like a total scatterbrain or idiot. I don't think anyone not having gone thru chemotherapy would understand this. They just think it's senility. But I just turned 53! Even as I am writing this I have to go back and fill in a missing word or two. Yes, I have notepads and pens around. At least I haven't had blind spots in a while. A couple of times I was walking, biking or driving and a car was coming and I didn't see it. It wasn't there when I turned my head and looked! I'm just lucky to be alive sitting here at the keyboard. I wish there was some sort of disability for this. I have a 14-year old to support and it isn't getting any easier. I hate to think if I had to go thru chemo again. Then ALL my brain cells would be gone. I am just kidding but you never know.......

    Sounds bad.....
    I wondered myself about what would happen if I was so bad I couldn't function. Would there be disability? I don't know. Thank God my husband has taken over the bill paying (after I made a $400 error in the check book). I do try to take my vitamins. Somewhere I read where vitamin E, CoenzymeQ10 are good for the brain as well as ginko. I try to take Lutein for my eyes. I am a little sporadic about taking my vitamins but I think it does help. I try to stimulate my brain by learning new things and doing word puzzles everyday. Besides the difficulty with numbers I find myself dropping the last letter of words I'd write. I think that has gotten better but it is frustrating!!!!!!!! Wish I had the answers!!
  • Dreamdove
    Dreamdove Member Posts: 175
    artizan said:

    Sounds bad.....
    I wondered myself about what would happen if I was so bad I couldn't function. Would there be disability? I don't know. Thank God my husband has taken over the bill paying (after I made a $400 error in the check book). I do try to take my vitamins. Somewhere I read where vitamin E, CoenzymeQ10 are good for the brain as well as ginko. I try to take Lutein for my eyes. I am a little sporadic about taking my vitamins but I think it does help. I try to stimulate my brain by learning new things and doing word puzzles everyday. Besides the difficulty with numbers I find myself dropping the last letter of words I'd write. I think that has gotten better but it is frustrating!!!!!!!! Wish I had the answers!!

    I can't have blonde moments, I'm not blonde
    I don't think they tell us side-effects of chemo ahead of time so we don't start expecting them. Maybe there are people who don't get chemo-brain, I don't know. I don't remember my mother ever mentioning it or complaining about her mental faculties 20 years when she went thru cancer. I never even heard about it before I had cancer. How many people do? I always think wouldn't it be so wonderful if they could just zap the tumors with a laser instead of a person going thru surgery, chemo, etc. With ovarian cancer like I had, my uterus, fallopian tubes, ovaries, cervix, lympe nodes, "fatty apron", and even appendix were removed. It would have been alot easier if those tumors could have been zapped away. No hospitalization needed. But sadly we are only in year 2008, not 2060.
  • MARINABLUE
    MARINABLUE Member Posts: 1
    Dreamdove said:

    I can't have blonde moments, I'm not blonde
    I don't think they tell us side-effects of chemo ahead of time so we don't start expecting them. Maybe there are people who don't get chemo-brain, I don't know. I don't remember my mother ever mentioning it or complaining about her mental faculties 20 years when she went thru cancer. I never even heard about it before I had cancer. How many people do? I always think wouldn't it be so wonderful if they could just zap the tumors with a laser instead of a person going thru surgery, chemo, etc. With ovarian cancer like I had, my uterus, fallopian tubes, ovaries, cervix, lympe nodes, "fatty apron", and even appendix were removed. It would have been alot easier if those tumors could have been zapped away. No hospitalization needed. But sadly we are only in year 2008, not 2060.

    chemobrain
    I am glad to hear its not just me! I had chemo while I was pregnant and then had it 6 months after my daughter was born along with radiation. I am so scatterbrained and I never was before! I find it hard to focus and it has been over a yr since I had my last treatments.
    I thought it was just from the early menopause (I had cervical cancer stage 2). I just wish they made a magical something to make me feel like "normal" again. I am allergic to Estrogin (hives that look like I have been beaten with a willow switch). Argh!! Any thoughts??
  • artizan
    artizan Member Posts: 59

    chemobrain
    I am glad to hear its not just me! I had chemo while I was pregnant and then had it 6 months after my daughter was born along with radiation. I am so scatterbrained and I never was before! I find it hard to focus and it has been over a yr since I had my last treatments.
    I thought it was just from the early menopause (I had cervical cancer stage 2). I just wish they made a magical something to make me feel like "normal" again. I am allergic to Estrogin (hives that look like I have been beaten with a willow switch). Argh!! Any thoughts??

    No thoughts
    Oh, that wasn't meant to be funny but.....
    I am beginning to see more information now where chemo brain is recognized as being real. I was infact informed of it before my treatment as well as the possible heart related side effects and many not so significant effects as well. I had A/C which was described by my onco nurses as the "big guns" chemo. I don't think my mom has chemo brain and she is now 80 years old. I don't know what drugs she was given or at what doseage. I suppose that makes a lot of difference. It is a struggle but I am thankful to be alive even though life is very different. I suppose any of you currently seeing an oncologist could inquire as to whether there has been any brain scan research on women before and after chemo. They are learning so much about the brain and its function these days.
    Blessing to you all this Thanksgiving season.
  • artizan
    artizan Member Posts: 59
    artizan said:

    No thoughts
    Oh, that wasn't meant to be funny but.....
    I am beginning to see more information now where chemo brain is recognized as being real. I was infact informed of it before my treatment as well as the possible heart related side effects and many not so significant effects as well. I had A/C which was described by my onco nurses as the "big guns" chemo. I don't think my mom has chemo brain and she is now 80 years old. I don't know what drugs she was given or at what doseage. I suppose that makes a lot of difference. It is a struggle but I am thankful to be alive even though life is very different. I suppose any of you currently seeing an oncologist could inquire as to whether there has been any brain scan research on women before and after chemo. They are learning so much about the brain and its function these days.
    Blessing to you all this Thanksgiving season.

    I searched for "medical research, chemo brain" and then for "chemo brain" and found that there is a lot going on - studies, drug tests, etc. I am about to play brain games that were a link from one of the sites. www.lumosity.com
    I guess there's still hope.
  • Dreamdove
    Dreamdove Member Posts: 175
    artizan said:

    I searched for "medical research, chemo brain" and then for "chemo brain" and found that there is a lot going on - studies, drug tests, etc. I am about to play brain games that were a link from one of the sites. www.lumosity.com
    I guess there's still hope.

    I hope research is being done
    I've heard that it takes up to 10 years to get brain function back. I don't know how much that varies with each person and the type of chemo one has. I can put up with the forgetfulness, etc. but the fact that I nearly got run over by a car a couple of times was another story. Also, I had brain freeze a few times where I was driving down local roads and all of the sudden I didn't recognize where I was even though I should have. The worst thing is that other people don't understand. Before I had cancer I never heard of it. My mother never mentioned it. So I suppose most people don't realize how it affects the brain, they just know about the hair loss. That's all you hear about.
  • artizan
    artizan Member Posts: 59
    Dreamdove said:

    I hope research is being done
    I've heard that it takes up to 10 years to get brain function back. I don't know how much that varies with each person and the type of chemo one has. I can put up with the forgetfulness, etc. but the fact that I nearly got run over by a car a couple of times was another story. Also, I had brain freeze a few times where I was driving down local roads and all of the sudden I didn't recognize where I was even though I should have. The worst thing is that other people don't understand. Before I had cancer I never heard of it. My mother never mentioned it. So I suppose most people don't realize how it affects the brain, they just know about the hair loss. That's all you hear about.

    Did you see the post about Americans with Disabilities Act?
    Dreamdove,
    I don't know but it may be that mental impairment would be covered under the new ADA law.