"CHEMO-BRAIN"
Comments
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Chemo Brain in Bone marrow transplant patientKCleaver said:Chris that sounds extreme
I had a bone marrow transplant 12 years ago with that enormous radiatioin and have mostly joked about chemo brain now that I am 56 - my short term memory is worsening but who knows if its aging or cb. I did find and have a copy of an article, several years ago where they tested breast cancer survivors vs a control group - they could measure how hard the part of the brain responsible for memory was working when the women were asked to remember something they were shown. It was determined by blood flow to this part of the brain. And the cancer patients did show significantly more effort in remembering.
I have not been looking but I have not seen anything since. I cant imagine you cant get disability - very upsetting.
I will say I have had to adapt habits, mostly writing things down, since my short term memory started getting weak. But nothing like Chris, my heart is with you.
Hi K Cleaverm,
I too had a bone marrow transplant 24 years ago at the age of 26 years for acute myloid leukameia.
No problems until about 10 years ago,I started getting very bad headaches that could last up to 3 days I tired easier and my short term memory since then has gone downhill fast. I can hardly remember what I did yesterday.
I am not complaining as I have had a happy, busy and successful life since my transplant.
I started my own buisness 15 months after my transplant and ran it for 10 years.
I am still in full time empoyment ,have never been out of work since leaving school at the age of 16 years and I celebrate my 50th birhday this weekend.I met my wife Shona 10 months after my transplant we married nearly 16 years ago and a year later our Jason was born.
I had sperm frozen before my transplant and it was used for this 8 years later. I count myself lucky in life not unlucky.0 -
Misinformation
I just read a comment on this board in response to what you were asking about chemobrain and had to respond.
The person stated that they never heard of a person who 20 years after treatment has had chemo brain and that is just false because I am one of those people. I have chemo brain and cognitive function issues on and off and I am a 20 year survivor of non hodgkins lymphoma after having a bone marrow transplant and total body radiation. I suffer from many of the things you describe and then some but I want to add here that no two cancer survivors are never the same so what one has others may certainly not experience, too many different variables. I have also talked to many survivors who are longer term and still suffer from these issues as well.
I actually went to a Memory Clinic in one of our big hospitals here in Canada and saw a neurologist who was very familiar with the term chemo brain and assured me that it wasn't just me and that they were seeing this now with many other survivors like me. There is certainly a memory issue right after treatments but for some as years go by this does get worse and I am a living example and as I said earlier have talked to others as well, some longer and some shorter survival times than mine.
Years back they thought that chemo drugs did not cross what they call the blood/brain barrier but now they know that SOME chemo drugs do, not all is what I was told. Also radiation can have an effect on issues if the brain is radiated. It was described to me this way. It is not exactly a damage to the brain perse but the brain is just somewhat 'weakened' by some of these treatments so that normal processes such as aging for example are not tolerated as well in someone who was treated as opposed to someone who was not with chemo and radiation.
This information all came from a neurologist/surgeon who deals with Altzheimer patients and other brain disfunctions in his specialty. I think there is alot to yet be learned about the ramifications of treatments for cancer but it all comes down to the bottomline doesn't it? Weighing options - life vs side effects that are possible down the road.
When I asked this specialist about possible treatments for chemobrain he said that there was some success with antidepressants and since I have spoken with on person on this site who has tried that and for her it clearly worked quite well. The specialist also said there were some studies done saying ritalin could be of value as well. Of course you have to speak with your doctor about what he/she might think of all of this based on your own personal situation with your health and treatment plans.
Remember though EVERYONE HANDLES TREATMENTS DIFFERENTLY. Don't think that just because I or anyone else has had this happen to them that automatically you will have the same experience. No two people are the same and no two cancers are the same and no one responds or is affected exactly the same way as someone else.
All the best.
Hope this gives you some further information that might prove helpful.
Blessings.
Bluerose0 -
CHEMO BRAINbluerose said:Misinformation
I just read a comment on this board in response to what you were asking about chemobrain and had to respond.
The person stated that they never heard of a person who 20 years after treatment has had chemo brain and that is just false because I am one of those people. I have chemo brain and cognitive function issues on and off and I am a 20 year survivor of non hodgkins lymphoma after having a bone marrow transplant and total body radiation. I suffer from many of the things you describe and then some but I want to add here that no two cancer survivors are never the same so what one has others may certainly not experience, too many different variables. I have also talked to many survivors who are longer term and still suffer from these issues as well.
I actually went to a Memory Clinic in one of our big hospitals here in Canada and saw a neurologist who was very familiar with the term chemo brain and assured me that it wasn't just me and that they were seeing this now with many other survivors like me. There is certainly a memory issue right after treatments but for some as years go by this does get worse and I am a living example and as I said earlier have talked to others as well, some longer and some shorter survival times than mine.
Years back they thought that chemo drugs did not cross what they call the blood/brain barrier but now they know that SOME chemo drugs do, not all is what I was told. Also radiation can have an effect on issues if the brain is radiated. It was described to me this way. It is not exactly a damage to the brain perse but the brain is just somewhat 'weakened' by some of these treatments so that normal processes such as aging for example are not tolerated as well in someone who was treated as opposed to someone who was not with chemo and radiation.
This information all came from a neurologist/surgeon who deals with Altzheimer patients and other brain disfunctions in his specialty. I think there is alot to yet be learned about the ramifications of treatments for cancer but it all comes down to the bottomline doesn't it? Weighing options - life vs side effects that are possible down the road.
When I asked this specialist about possible treatments for chemobrain he said that there was some success with antidepressants and since I have spoken with on person on this site who has tried that and for her it clearly worked quite well. The specialist also said there were some studies done saying ritalin could be of value as well. Of course you have to speak with your doctor about what he/she might think of all of this based on your own personal situation with your health and treatment plans.
Remember though EVERYONE HANDLES TREATMENTS DIFFERENTLY. Don't think that just because I or anyone else has had this happen to them that automatically you will have the same experience. No two people are the same and no two cancers are the same and no one responds or is affected exactly the same way as someone else.
All the best.
Hope this gives you some further information that might prove helpful.
Blessings.
Bluerose
Dear Flakey Flake,
I loved how you said "I MISS ME' that could not of been said better. Thank you.
kim0 -
chemo brain: me too!
it has been 20 years for me and i still have severe chemo brain. i too had a high IQ and 3 Masters degrees. soon as the chemo was over it was a whole 'nuther brain. trouble reading and comprehending books ..... imagine, i zoomed through 4-5 a week before! lots of mental confusion vis a vis milk in the oven, sneakers in the freezer ...slow processing speed, and the brain fatigue.........i also have fibromyalgia which has a cognitive component they call "fibro fog" so maybe that is what gives me a double whammy...also diagnosed after chemo. i have been on disability and was recently terminated so i have been doing a lot of research on chemobrain for my appeal. amazingly experts are starting to listen. my cognitive defects have consistently shown up in neuropsychological testing and also in SPEC imaging scans taken a couple years after chemo. i haven't had a very normal functional life since chemo and provigil has helped me a lot too, but no cure. i have found taking coQ 10 and omega/fish oils to be very helpful in helping my brain be less cloudy. I found 3 major researchers who have written books and data and read about some newer PET brain scans that seem to substantiate the brain changes. i think they have to be specialized scans...my onocologist says....i am patiently researching that now....
google these names: Dr. Daniel Silverman, UCLA
Dr. Stewart Fleishman, Beth Israel Med Ctr. New York, NY
Mark Noble, U of Rochester
they have contributed significant data toward this problem. we do need more.....in the meantime...can someone make the login password easier for me to remember? ; )0 -
My mom tooFlakey_Flake said:I Miss Me
None of my caregivers ever mentionsed any SE of congnitive deterioation. Had I known what I was to go through, I may have declined treatment. As it is I made the choice to fight, and I will fight with all I have.
Shortly after my first round of chemo (breast c - dense dose A/C) I noticed I couldn't remember things. What little energy I could muster was wasted wandering from one room to the next. I was a sutdent at the time and I would read a paragraph three times to gather what it contained, only to have it empty out of my head when I read the next paragraph. At first I thought it was just fatigue. Then I started forgetting how to do simple things. Write a check, where dishes went, how to use the can opener. This started to scare me. I was like a lost child. I knew I couldn't continue school - it was ridiculous to try. I was very scared and didn't knwo what to do. I called my onc nurse in hysterical tears, trying to telll her what was happening to me. She was actually surprised I had not heard of chemo brain or chemo fog. She said that my onc didn't put must credence in it. I called my family doc, who gave me anti-depressants. They calmed me down a bit, but didn't really do much to change it. Since then I've been put on stronger anti-depressants, B comlex vitamins and prescription folic acid to see if that doesn't help with the memory issues. I have done internet reasearch on chemo brain, but can never remember exactly whst I've read. I keep trying to do things to improve my memory - read, play puzzles, etc. I don't see many poeople. My boyfirend and my son, who simply put up with my repetitions. When I go for treatment my boyfriend always takes me, so I have someone who might remember what was said. I can't find my way from the chemo trestment area to the waiting room with out help, and I have been going there for six months. I am easily confused - sometimes when I wash dishes, I can't decide if I should pick up the cup, or the fork, or what I am supposed to do. I seem to be able to carry on a conversation with friends who call me on the phone, but am always struggling to find words. I have explained to them about chemo brain, and they seem understanding of my recent shortcomings. I am sure there are times I repeat myself, as after saying something it will suddenly dawn on me I said it before. When I email friends and family and there are several messages in the reply, I will read them, and see that I have retold things as though it were something new. The really dumb part is, you never know when or where it will strike. Sometimes I have to ponder for five minutes to remember how to pay a bill online. Sometimes I can just zip right through it. I leave car doors open, food on the counter, dishes half done, I never know what I will find. I scare me. I am afraid to drive, not because I mght hurt myself, or my car - but how would I live with myself if I hurt or killed someone else knowing that I am not at capacity to responsibly control a vehicle.
If I were an employer I certainly would not hire me. And I have a very good reputation for being a dependable worker, quick to learn and eager to tske on responsiblility. But I am no no longer that person. Will this dissapate over time? Who can say? My family doc at least will acknowledge what chemo brain is, but seems to think it will cure itself once chemo is over. I hope she is right, but there is no guarantee. In the mean time I will continue to be treated for depression, and I am seeing a nuerologist for essential tremors. I am not sure yet what his take on chemo brain is. I will ask on my next visit, but I will not be surprised if he poo-poo's the whole thing. After all, what test is there to confirm or deny chemo brain. Many of the symptome mimic depression. As far as I can remember (HA!) from reading up on chemo brain, there are no distinct markers where someone can say for certain it is chemo brain or something else. In the medical world it seems to be a very subjective topic. I am applying for disability, but will have to try for it on depression, as as far as I can tell SS Disability does not recognize chemo brain either.
I joke when I can about it, but inside I am crying. I miss me.
When she finally mentioned to her oncologist that she was having trouble remembering things(after about her 3rd treatment), he mentioned 'chemo brain'...and her nurse that she was having inject her with chemo said the same thing. The chemo just kills off the brain, but no explanation why or how come was ever given. We try and laugh about it here, how she always thinks every other day is Saturday or when she says a word backward, like "rock-croaches" instead of 'cockroaches'..but I know it bothers her that her brain isn't what it used to be. She hasn't had any chemo in her system since January, but her doctor never told her that she would recover from this random memory loss. And now that she is considered a 'terminal' patient, she has stopped bothering to ask about it. My dad and I just try to be as patient as we can with her new disability and tease her that we hope it's not catching. As I said, we try to turn it to humor so she doesn't get as upset and get down about it. Good luck with SS, they seem to immediately deny regardless of the reasons why you're applying the 1st time as policy...several relations of mine have had to wait a year or more to get things resolved with them. But maybe this time you'll have better luck. Hugs to you, and strength.0 -
CHEMO BRAIN CHEMO LEFTOVERSJillyB said:Chmoe Brain
Wow, 20 years later! And I am having trouble convincing my dad it is a real thing now, as I go thru chemo. I am so sorry about 80 jobs! I have no answers for you, but just wantd you to know that I will be thinking of you, and actually, because my dad doesn't quite believe in it, he thinks it's more pain meds, my Cancer Center is sending Federal Newsletter tht is has been recognized as a real thing,and what it involves. If you want, I can try to scan it inot my computer and post it? But my Printer/scanner thingy is on the fritz,so i'm not sure it willl work. Well, enough typos I dont' know how to finish, so like I sais, I have no answers for you, but tons of empathy, and someday, hopefully soon, it will be recognized as a Disability and you will get it. That is just something I know.
My extended family had a hard time and still do, in fact I find that more people than not have a hard time understanding. Those things that are not understood are looked at with doubt. The people I most wanted to understand seemed to react as if it has to be the medication, we're all getting older or that ok if you say so attitude. They are loving but they believe I could start or stop this if I wanted. It is so frustrating to me to be fighting this anyway. I cornered my doc and said HELP with some of these leftovers He actually FINALLY TOLD ME the med field does not know how to fight this yet. It has not been that long that we had to aqcknowledge this is a real diagnoised med condition that is not only real it has been scientifically proven. We as survivors made the world look and see that yes we are eternally grateful for haven been spared life but there is some major side effects, leftovers that are LEFTOVER and for the world and especially the med field to act now that, its not just in our heads (ha, ha) or, instead of complaining, wich none of us are. we're trying to figure how to live with it, we don't feel sorry for ourselfs, and it is not the medicine we're on now. I am different now than I was before treatment. It is up to all of us to keep making the world aware and fight to find coping mech. Then at least the survivors in the present will have a way of dealing with this because all of us never gave up.And survivors to come will maybe not even have to deal with this paticular leftover.
friends Thank you for risking and helping me feel strong instead of feeling insecure!0 -
et too, ...ssi/chemofogyarrowoman said:chemo brain: me too!
it has been 20 years for me and i still have severe chemo brain. i too had a high IQ and 3 Masters degrees. soon as the chemo was over it was a whole 'nuther brain. trouble reading and comprehending books ..... imagine, i zoomed through 4-5 a week before! lots of mental confusion vis a vis milk in the oven, sneakers in the freezer ...slow processing speed, and the brain fatigue.........i also have fibromyalgia which has a cognitive component they call "fibro fog" so maybe that is what gives me a double whammy...also diagnosed after chemo. i have been on disability and was recently terminated so i have been doing a lot of research on chemobrain for my appeal. amazingly experts are starting to listen. my cognitive defects have consistently shown up in neuropsychological testing and also in SPEC imaging scans taken a couple years after chemo. i haven't had a very normal functional life since chemo and provigil has helped me a lot too, but no cure. i have found taking coQ 10 and omega/fish oils to be very helpful in helping my brain be less cloudy. I found 3 major researchers who have written books and data and read about some newer PET brain scans that seem to substantiate the brain changes. i think they have to be specialized scans...my onocologist says....i am patiently researching that now....
google these names: Dr. Daniel Silverman, UCLA
Dr. Stewart Fleishman, Beth Israel Med Ctr. New York, NY
Mark Noble, U of Rochester
they have contributed significant data toward this problem. we do need more.....in the meantime...can someone make the login password easier for me to remember? ; )
Hello, I myself realized I have chemofog. 3 year survivor, post bmt, AML. Can I ask how long you were on SSI before they stripped it from you; I am appealing their decision to take mine away. Also how has your blood work (CBC) been all these years? My blood work have been low (rbc,wbc,hematocrit,hmg;3.19,3.79,34.6%,11.9 respectively).Did your onco send SSI a letter or was he/she capable of reversing the denial from SSI? Some information I came across states that anemia may play a significant role in memory and cognitive ability. TRUST IN GOD.0 -
I love chemo brainrathgirl said:wow. reading everybodys
wow. reading everybodys comments about chemo brain explains a lot of things to me! i thought it was just me too. ok and now i know what to kinda expect in the future too. thanks!
I have a new normal these days and that's ok. I did have chemo brain and still have what I like to call episodes, then there are the days when I look at my hubby and say..........you did NOT tell me that.
LOL.
I for one hope the very bad days stay away.0 -
My Mom is not the samesea60 said:Yes, have felt that
I thought it would go away but I still struggle to remember words sometimes in mid-sentence...how embarassing!
Blessings,
Syl
Chemo Brain...so that is what it is called. It has been 7 years since my Mom had any chemo. We started noticing some behavior and personality changes about a 1 year after her last treatment. Looking back there were probably some things going on, but she hid them well or we just didn't notice them. My mom is NOT the same person. Her personality is completely different. I have even spoken to Dr's about this...they did some cognitive testing, but I honestly think they don't believe me. They aren't around her enough and she is very manipulative when she wants to be. She has had MRI's for other health issues, so there has not been a stroke. She is on anti-depressants since my dad passed away 4 years ago. Alot of the behavior issues started before he passed away, so I don't think it is all due to depression. Her dr started her on weekly B12 injections as she was very deficiant, and they did bring some improvement. But it is still really hard. She is only 68 yrs old and we have had to take away her ability to drive a car and she still has many days of using very poor judgement concerning her activities around the house. I think I will do some digging around online and arm myself with some information and go back and see her doctor. Has anyone heard of any treatment that has shown any improvement with the memory or behavior changes?
Thanks so much for listening!0 -
the words just won't come outlonestargal said:My Mom is not the same
Chemo Brain...so that is what it is called. It has been 7 years since my Mom had any chemo. We started noticing some behavior and personality changes about a 1 year after her last treatment. Looking back there were probably some things going on, but she hid them well or we just didn't notice them. My mom is NOT the same person. Her personality is completely different. I have even spoken to Dr's about this...they did some cognitive testing, but I honestly think they don't believe me. They aren't around her enough and she is very manipulative when she wants to be. She has had MRI's for other health issues, so there has not been a stroke. She is on anti-depressants since my dad passed away 4 years ago. Alot of the behavior issues started before he passed away, so I don't think it is all due to depression. Her dr started her on weekly B12 injections as she was very deficiant, and they did bring some improvement. But it is still really hard. She is only 68 yrs old and we have had to take away her ability to drive a car and she still has many days of using very poor judgement concerning her activities around the house. I think I will do some digging around online and arm myself with some information and go back and see her doctor. Has anyone heard of any treatment that has shown any improvement with the memory or behavior changes?
Thanks so much for listening!
I don't know how many times I stand there just trying to say something, knowing what I want to say, and the words will not come out of my mouth.
I didn't know chemo brain was real.
I thought it was just me.
Now I am falling apart. Arthritis, chemo brain, what next?
I can laugh at it.
I get confused easily too. I will mix up days.
I was always good at knowing where everything is, now I write down alot of things, I have to check the calendar all the time. I have payed bills twice, and still don't remember paying them. I double check my bank account so it dosen't over draft. Hopefully this won't last to long. It's hard to let other people have control over my life, remind me what I need to do today, or did you do this yet?
So far I keep it all going. I just notice every once in awhile I am mixed up. Thank the good Lord I have a great family and friends that help me. (keep me straight) They don't let me go wrong, and call me to make sure I've done what I should have. I have had less problems since my 2nd round of chemo treatments has been finished for 2 months.
Thank you all so much for sharing this, It helps to know others are having the same
problems.
Eileen0 -
Yep, me tooEJmauldin said:the words just won't come out
I don't know how many times I stand there just trying to say something, knowing what I want to say, and the words will not come out of my mouth.
I didn't know chemo brain was real.
I thought it was just me.
Now I am falling apart. Arthritis, chemo brain, what next?
I can laugh at it.
I get confused easily too. I will mix up days.
I was always good at knowing where everything is, now I write down alot of things, I have to check the calendar all the time. I have payed bills twice, and still don't remember paying them. I double check my bank account so it dosen't over draft. Hopefully this won't last to long. It's hard to let other people have control over my life, remind me what I need to do today, or did you do this yet?
So far I keep it all going. I just notice every once in awhile I am mixed up. Thank the good Lord I have a great family and friends that help me. (keep me straight) They don't let me go wrong, and call me to make sure I've done what I should have. I have had less problems since my 2nd round of chemo treatments has been finished for 2 months.
Thank you all so much for sharing this, It helps to know others are having the same
problems.
Eileen
I am two years out from my last chemo treatment.
I, too, have trouble remembering/getting words out
My cognitive abilities are less than they were
I actually forgot my address the other day - the address that I've had for over 5 years !!! (that was embarrassing/scary/frustrating)
My short-term memory is shot
Etc., etc.
I've had medical professionals laugh when I say "chemo brain", like I was making it up.
I've actually forgotten what else I wanted to say, no kidding - argh.
Love,
Cecile0 -
Chemo brain is very real. iCecile Louise said:Yep, me too
I am two years out from my last chemo treatment.
I, too, have trouble remembering/getting words out
My cognitive abilities are less than they were
I actually forgot my address the other day - the address that I've had for over 5 years !!! (that was embarrassing/scary/frustrating)
My short-term memory is shot
Etc., etc.
I've had medical professionals laugh when I say "chemo brain", like I was making it up.
I've actually forgotten what else I wanted to say, no kidding - argh.
Love,
Cecile
Chemo brain is very real. i have it but it is getting better. so there is hope!!0 -
According to the American Cancer Societycarkris said:Chemo brain is very real. i
Chemo brain is very real. i have it but it is getting better. so there is hope!!
According to the American Cancer Society:
"Yes, chemo brain is real, but its cause is unknown. How often it happens, what may trigger it, or what can be done to prevent it, is also unknown.
Research has shown that some cancer drugs can, indeed, cause changes in the brain. Imaging tests have shown that after chemotherapy, some patients have smaller brain size in the parts of the brain that deal with memory, planning, putting thoughts into action, monitoring thought processes and behavior, and inhibition.
Though the brain usually recovers over time, the sometimes vague yet distressing mental changes cancer patients notice are real, not imagined. These changes can make people unable to go back to their school, work, or social activities, or make it so that it takes a lot of mental effort to do so. They affect daily activities and need to be researched further.
Pictures of the brain have shown changes in the brain activity of breast cancer survivors treated with chemo when compared with those who were not treated with chemo. These changes were still seen on scans 5 to 10 years after treatment stopped."
http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/ChemotherapyEffects/chemo-brain0 -
Chemo BrainLori-S said:According to the American Cancer Society
According to the American Cancer Society:
"Yes, chemo brain is real, but its cause is unknown. How often it happens, what may trigger it, or what can be done to prevent it, is also unknown.
Research has shown that some cancer drugs can, indeed, cause changes in the brain. Imaging tests have shown that after chemotherapy, some patients have smaller brain size in the parts of the brain that deal with memory, planning, putting thoughts into action, monitoring thought processes and behavior, and inhibition.
Though the brain usually recovers over time, the sometimes vague yet distressing mental changes cancer patients notice are real, not imagined. These changes can make people unable to go back to their school, work, or social activities, or make it so that it takes a lot of mental effort to do so. They affect daily activities and need to be researched further.
Pictures of the brain have shown changes in the brain activity of breast cancer survivors treated with chemo when compared with those who were not treated with chemo. These changes were still seen on scans 5 to 10 years after treatment stopped."
http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/ChemotherapyEffects/chemo-brain
I am 5 yrs post chemo. I can honestly say that this year has been the least stressful. Is it because the chemo brain has gotten better or is it because I don't fight it as hard or care if I hide it any more. Does it really take 5 yrs for them to regulate the medicines I've been left to take. Have I gotten better from all the side effects chemo leaves you or has God just blessed me with acceptance and the ability to move on. I can't tell you for sure which one it is BUT I can tell you that at 5 yrs I have become more comfortable. At least today.
So don't give up hope.
kim0 -
disability status for chemo brainyarrowoman said:chemo brain: me too!
it has been 20 years for me and i still have severe chemo brain. i too had a high IQ and 3 Masters degrees. soon as the chemo was over it was a whole 'nuther brain. trouble reading and comprehending books ..... imagine, i zoomed through 4-5 a week before! lots of mental confusion vis a vis milk in the oven, sneakers in the freezer ...slow processing speed, and the brain fatigue.........i also have fibromyalgia which has a cognitive component they call "fibro fog" so maybe that is what gives me a double whammy...also diagnosed after chemo. i have been on disability and was recently terminated so i have been doing a lot of research on chemobrain for my appeal. amazingly experts are starting to listen. my cognitive defects have consistently shown up in neuropsychological testing and also in SPEC imaging scans taken a couple years after chemo. i haven't had a very normal functional life since chemo and provigil has helped me a lot too, but no cure. i have found taking coQ 10 and omega/fish oils to be very helpful in helping my brain be less cloudy. I found 3 major researchers who have written books and data and read about some newer PET brain scans that seem to substantiate the brain changes. i think they have to be specialized scans...my onocologist says....i am patiently researching that now....
google these names: Dr. Daniel Silverman, UCLA
Dr. Stewart Fleishman, Beth Israel Med Ctr. New York, NY
Mark Noble, U of Rochester
they have contributed significant data toward this problem. we do need more.....in the meantime...can someone make the login password easier for me to remember? ; )
I just joined this site and can so relate to you. I am 58 though and because of my age and past job as a Nurse Practitioner SSDI did grant me disability mostly on the cognitive problems I had documented on neuro psy testing. I hope you are still out there as I would like to know if you were able to get disability awarded again since that is my greatest fear...having it taken away and my not being able to go back to work at the only thing I knew how to do.
lizgage@msn.com0 -
According to my well known Oncologist here in Southernkkkelley1 said:Chemo Brain
I am 5 yrs post chemo. I can honestly say that this year has been the least stressful. Is it because the chemo brain has gotten better or is it because I don't fight it as hard or care if I hide it any more. Does it really take 5 yrs for them to regulate the medicines I've been left to take. Have I gotten better from all the side effects chemo leaves you or has God just blessed me with acceptance and the ability to move on. I can't tell you for sure which one it is BUT I can tell you that at 5 yrs I have become more comfortable. At least today.
So don't give up hope.
kim
California .. there is 'no' such thing as chemo brain. Sad ...0 -
Grrrrrrrrrrrrrrrrrrrrrrr - No such thing as chemo brain? LOL.VickiSam said:According to my well known Oncologist here in Southern
California .. there is 'no' such thing as chemo brain. Sad ...
VickiSam? One question? Does your Oncologist know how to read? lol. Sheeesh. There is all kinds of data out there now that says it does plus a bazillion cancer survivors that know it's true as well.
I mentioned this earlier on this subject but I was having such a hard time I went to a Memory Clinic at one of out big hospitals here and had tests run by a neurosurgeon and while I was okay for early dementia and altzheimer's (whew) I was showing signs of short term memory loss and confusion. Here is the really interesting part, I thought. This neurosurgeon said that years ago the medical community thought that chemo did not cross the blood-brain barrier but NOW they know that some chemo drugs do. That is what can promote 'chemo brain' issues. He said that it's not really damage perse but rather it's a weakening of the brain (sounds like damage to me but anywho). He said that how I should look at it is that if a brain is hit with chemo that does cross the blood-brain barrier then natural rythyms in life like aging take a greater toll on a chemoed brain than it would on a brain that never was 'chemoed'.
This neurosurgeon also said that they are seeing quite a bit of this 'chemo brain' (that he had no problem acknowledging' in long term survivors of cancer who had been treated with these same chemo drugs. I thought what he said dovetailed with me totally. You don't have to be a long term survivor to notice differences though, earlier you could have memory and cognitive issues too but most pass them off as just a once in awhile thing but in fact later on they will realize it was all leading up to more significant memory and cognitive issues.
I think you might need a second opinion on this if you are interested in being validated on this topic. We know out own bodies and we get hunches that if researched often will prove that we were right all along. I remember seeing a rheumatologist who blamed all my pains on 'having to go through cancer' - sheeesh. I asked for a second opinion and went to see another rheumatologist who spent 2 hours with me, the first one was in for 5 mintues by the way, she ran tests, had me see other doctors for various things to help her diagnosis and she came out with 3 diagnosis for me, well 4 really. One was 'you're not nuts', that was a helpful one because I told her that I felt like that after I saw the first rheum. The second diagnosis was fibromyalgia, 3rd was osteoarthritis and 4th was bursitis. All very painful and obvious diagnosis to her.
Finally VALIDATION.
Blessings kiddo,
Blueroses0 -
Work and Chemo Brainbluerose said:Grrrrrrrrrrrrrrrrrrrrrrr - No such thing as chemo brain? LOL.
VickiSam? One question? Does your Oncologist know how to read? lol. Sheeesh. There is all kinds of data out there now that says it does plus a bazillion cancer survivors that know it's true as well.
I mentioned this earlier on this subject but I was having such a hard time I went to a Memory Clinic at one of out big hospitals here and had tests run by a neurosurgeon and while I was okay for early dementia and altzheimer's (whew) I was showing signs of short term memory loss and confusion. Here is the really interesting part, I thought. This neurosurgeon said that years ago the medical community thought that chemo did not cross the blood-brain barrier but NOW they know that some chemo drugs do. That is what can promote 'chemo brain' issues. He said that it's not really damage perse but rather it's a weakening of the brain (sounds like damage to me but anywho). He said that how I should look at it is that if a brain is hit with chemo that does cross the blood-brain barrier then natural rythyms in life like aging take a greater toll on a chemoed brain than it would on a brain that never was 'chemoed'.
This neurosurgeon also said that they are seeing quite a bit of this 'chemo brain' (that he had no problem acknowledging' in long term survivors of cancer who had been treated with these same chemo drugs. I thought what he said dovetailed with me totally. You don't have to be a long term survivor to notice differences though, earlier you could have memory and cognitive issues too but most pass them off as just a once in awhile thing but in fact later on they will realize it was all leading up to more significant memory and cognitive issues.
I think you might need a second opinion on this if you are interested in being validated on this topic. We know out own bodies and we get hunches that if researched often will prove that we were right all along. I remember seeing a rheumatologist who blamed all my pains on 'having to go through cancer' - sheeesh. I asked for a second opinion and went to see another rheumatologist who spent 2 hours with me, the first one was in for 5 mintues by the way, she ran tests, had me see other doctors for various things to help her diagnosis and she came out with 3 diagnosis for me, well 4 really. One was 'you're not nuts', that was a helpful one because I told her that I felt like that after I saw the first rheum. The second diagnosis was fibromyalgia, 3rd was osteoarthritis and 4th was bursitis. All very painful and obvious diagnosis to her.
Finally VALIDATION.
Blessings kiddo,
Blueroses
Since I've been back to work, my supervisor and a couple of co-workers are using my chemo brain issues against me. It's hard enough and now to deal with this is taking a toll on me. Has anyone else dealt with this? What did you do?0
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