A few days ago, in another thread ("Kyprolis - confusion side effect?"), JenAuck asked about confusion as a possible side effect of Kyprolis. Kevin J replied and provided some good information about chemotherapy-related confusion, or "chemo brain." He also described a fictitious chemo brain experience that reminded me too much of some of my own days with chemo brain.
It seems like chemo brain might be a fairly common side effect for many of us, so I thought I'd start a "chemo brain" thread to encourage folks to discuss their experiences with chemo brain. (If we can remember them. Just kidding. Sort of.)
Some of the symptoms of chemo brain that I've seen listed include memory lapses, difficulty concentrating, difficulty multi-tasking, and taking longer to finish tasks (which others have described as executive function and planning difficulty.)
During my treatment, I've experienced some episodes of all of these problems. These issues were most prominent for me during the consolidation phase of my treatment. During that time, I was getting Revlimid, Velcade, and dex (RVD) shortly after my stem cell transplant (SCT). A particularly frustrating example was when I sat down at our home computer and could not remember the password I'd used almost daily for 15 years.
I'm on Revlimid maintenance now, and I still experience some chemo brainness, but it's not as bad as it used to be. One recent example is telling someone that "Photography is a habit of mine," when I meant to say "hobby" instead of "habit." It also still takes me longer to do almost any task than it used to, so I think I still have executive function deficits.
Of course, it's difficult to know which of these longer term problems are just caused by "normal" aging vs. chemotherapy or cancer itself.
So I'm wondering what sort of "chemo brain" issues to expect, when they're likely to occur, and whether they'll go away over time. Any feedback or insights would be much appreciated.
Mike
Moderator's Note:
You can find Beacon news articles and columns about chemo brain by going to the chemo brain topic page. All forum discussions on the subject can be found at this link, and all postings that mention both "chemo" and "brain" can be found at this link.
Forums
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Chemo brain - what to expect & will it go away?
Good idea to start a chemo brain thread Mike.
My husband is currently on Revlimid (5 mg), dex (20mg) and elotuzumab (clinical trial). He has been on this regimen for 11 months. I would say for about the past 5 months, he started confusing words sometimes. For example, recently he said "father-in-law," but he meant to say "stepfather." I've noticed this word substitution thing has been happening a little bit more frequently, but still probably not even noticeable to other people. He just turned 50, so maybe this is the beginning of "normal" aging that you speak of, but I don't know.
He was just saying today how he feels that he can't remember names as easily (people's names, street names, name of movies, etc.) He also feels that he is slightly clumsy and points to the dex as the culprit there. Aside from him dropping a glass bottle of mineral water and cracking a floor tile, I don't really notice any particular increase in clumsiness.
My husband is currently on Revlimid (5 mg), dex (20mg) and elotuzumab (clinical trial). He has been on this regimen for 11 months. I would say for about the past 5 months, he started confusing words sometimes. For example, recently he said "father-in-law," but he meant to say "stepfather." I've noticed this word substitution thing has been happening a little bit more frequently, but still probably not even noticeable to other people. He just turned 50, so maybe this is the beginning of "normal" aging that you speak of, but I don't know.
He was just saying today how he feels that he can't remember names as easily (people's names, street names, name of movies, etc.) He also feels that he is slightly clumsy and points to the dex as the culprit there. Aside from him dropping a glass bottle of mineral water and cracking a floor tile, I don't really notice any particular increase in clumsiness.
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Jean Ruth Howard - Name: Jeannie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 47
Re: Chemo brain - what to expect & will it go away?
I have definitely had chemo brain to varying degrees in the last three years.
During induction, when I was taking Velcade, dexamethasone, various neurological drugs and morphine and Dilaudid (hydromorphone) for neuropathy, and synthetic THC for appetite – all at the same time – I was a bit mentally fogged, especially with reading. When I went in for my stem cell transplant, I brought in a bunch of reading material, but read very little of it. I found I could not concentrate very well. Just after I would read a page, I could barely recall what I had just read. My handwriting looked like I had Parkinson’s disease. After the SCT, I started weaning myself off all the drugs, and I started regaining my ability to mentally focus again.
I had been on Revlimid maintenance therapy up until the last March. In the last three years I was on Revlimid maintenance therapy, there were a few times I had to take a break for more than a week and, at about the two week point, I could tell a little bit of a mental fog had lifted that I did not realize was there. Having a little fog had become my new normal, but it had not kept me from doing any of what I had done before. Sometimes I was very aware that the mental fog was there, as I found myself searching for words or mixing them up sometimes, losing a little coordination, etc.
When I have been taking dexamethasone, I can really notice a difference in concentration between the days when I am amped up with energy from dex and the crash days. This has made working a bit of a challenge, and I schedule my tasks around my dexamethasone schedule when I can.
Even being off Revlimid for over two months now, I still find that my short term memory is not quite what it used to be, and I have trouble with recalling names and events, like other people described.
During induction, when I was taking Velcade, dexamethasone, various neurological drugs and morphine and Dilaudid (hydromorphone) for neuropathy, and synthetic THC for appetite – all at the same time – I was a bit mentally fogged, especially with reading. When I went in for my stem cell transplant, I brought in a bunch of reading material, but read very little of it. I found I could not concentrate very well. Just after I would read a page, I could barely recall what I had just read. My handwriting looked like I had Parkinson’s disease. After the SCT, I started weaning myself off all the drugs, and I started regaining my ability to mentally focus again.
I had been on Revlimid maintenance therapy up until the last March. In the last three years I was on Revlimid maintenance therapy, there were a few times I had to take a break for more than a week and, at about the two week point, I could tell a little bit of a mental fog had lifted that I did not realize was there. Having a little fog had become my new normal, but it had not kept me from doing any of what I had done before. Sometimes I was very aware that the mental fog was there, as I found myself searching for words or mixing them up sometimes, losing a little coordination, etc.
When I have been taking dexamethasone, I can really notice a difference in concentration between the days when I am amped up with energy from dex and the crash days. This has made working a bit of a challenge, and I schedule my tasks around my dexamethasone schedule when I can.
Even being off Revlimid for over two months now, I still find that my short term memory is not quite what it used to be, and I have trouble with recalling names and events, like other people described.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Chemo brain - what to expect & will it go away?
Mikeb,
I can definitely add that my medications have contributed to chemo brain and that I have experienced much of what Eric H. has written about with such clarity. Focusing and concentrating on reading material is a notable problem for me. Often, even a simple article in the New York Times or Washington Post now requires rereading so I can understand what is being said. I previously worked as an attorney, and now I am thankful that retirement has spared me what surely would have been overwhelming mental anguish because of my loss of concentration ability.
I am considerably older than either you or Eric, so I cannot be 100% sure that my problems can be entirely attributed to the medications. So much of every one of my days is taken over by thinking about myeloma, that I wonder whether the loss of the ability to focus well on other issues is not somehow connected to that. Looking back on my life, I think multi-tasking was never one of my outstanding virtues.
I can definitely add that my medications have contributed to chemo brain and that I have experienced much of what Eric H. has written about with such clarity. Focusing and concentrating on reading material is a notable problem for me. Often, even a simple article in the New York Times or Washington Post now requires rereading so I can understand what is being said. I previously worked as an attorney, and now I am thankful that retirement has spared me what surely would have been overwhelming mental anguish because of my loss of concentration ability.
I am considerably older than either you or Eric, so I cannot be 100% sure that my problems can be entirely attributed to the medications. So much of every one of my days is taken over by thinking about myeloma, that I wonder whether the loss of the ability to focus well on other issues is not somehow connected to that. Looking back on my life, I think multi-tasking was never one of my outstanding virtues.
Re: Chemo brain - what to expect & will it go away?
My experience reflects much of what has been previously written. Eric describes the severe chemo brain I experienced during induction and stem cell transplant well.
For me, I think the main culprits pre-transplant were pain killers (I was on a lot) and dex – the latter because I could sleep only two hours a night, which severely compromises my ability to think. I remember one evening it took my husband and me three hours to pack my daily pill boxes, I had such difficulty thinking. Admittedly, it was a very complicated regimen, but still
.
However, I believe chemo brain is entirely real. I was off dex and almost off pain medications at the time of my SCT, yet had incredible fog after my high dose chemo and stem-cell transplant that lasted for several months. I couldn't even read something I had written myself. It took months out for that to resolve.
Another big improvement was when I got completely off pain medication. Now I am on biweekly Velcade, which affects me noticeably for only about 24 hours. However, like others, I am now retired, so the demands on my mental abilities are not close to what they were when I was still a professor. When I look back on how much I was able to hold in my head back then, it's rather disconcerting. There's no way I could do that job now, between chemo brain, age-related forgetfulness, and lack of stamina. Very fortunately, I was able to retire when I became ill, so I did not have the stress of trying to!
Ginny
For me, I think the main culprits pre-transplant were pain killers (I was on a lot) and dex – the latter because I could sleep only two hours a night, which severely compromises my ability to think. I remember one evening it took my husband and me three hours to pack my daily pill boxes, I had such difficulty thinking. Admittedly, it was a very complicated regimen, but still
.However, I believe chemo brain is entirely real. I was off dex and almost off pain medications at the time of my SCT, yet had incredible fog after my high dose chemo and stem-cell transplant that lasted for several months. I couldn't even read something I had written myself. It took months out for that to resolve.
Another big improvement was when I got completely off pain medication. Now I am on biweekly Velcade, which affects me noticeably for only about 24 hours. However, like others, I am now retired, so the demands on my mental abilities are not close to what they were when I was still a professor. When I look back on how much I was able to hold in my head back then, it's rather disconcerting. There's no way I could do that job now, between chemo brain, age-related forgetfulness, and lack of stamina. Very fortunately, I was able to retire when I became ill, so I did not have the stress of trying to!
Ginny
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Ginny - Name: Ginny
- Who do you know with myeloma?: self and four friends
- When were you/they diagnosed?: October, 2012
- Age at diagnosis: 62
Re: Chemo brain - what to expect & will it go away?
Chemo brain is real and quantifiable. Like those above, I recognized the lapses while I was experiencing them, but could do little to address them except get more sleep and exercise. Even those were little help during treatment.
In addition to the radiation treatments for a plasmacytoma (myeloma tumor), I was concurrently on Revlimid, Velcade and dex for almost 5 months. I call those the lost months. I was in a fog starting with the second cycle of drugs. It was all I could do to bathe, shave, and keep track of the drug schedule and treatment appointments.
About a month after treatment was suspended, the fog started to clear. Then I went in for a bone marrow transplant, and I was back in fog.
It wasn't until I was 4 months after the transplant date that I felt my brain was functioning well enough to allow me to go back to work. My job requires a great deal of brain power. I work as an independent strategist, consultant, and instructional designer.
My doctor put me on a maintenance (reduced) dose of Revlimid for 3 months while I was working. I did not notice any significant change in chemo brain during that period.
I have found that I still fall into lapses where I stare at data for 20 or 30 minutes without making progress, but I have found that a 45 minute nap clears that up, and I am good for another 2-3 hours. Exercise also helps, but the bone damage I sustained makes that more difficult than a nap.
In addition to the radiation treatments for a plasmacytoma (myeloma tumor), I was concurrently on Revlimid, Velcade and dex for almost 5 months. I call those the lost months. I was in a fog starting with the second cycle of drugs. It was all I could do to bathe, shave, and keep track of the drug schedule and treatment appointments.
About a month after treatment was suspended, the fog started to clear. Then I went in for a bone marrow transplant, and I was back in fog.
It wasn't until I was 4 months after the transplant date that I felt my brain was functioning well enough to allow me to go back to work. My job requires a great deal of brain power. I work as an independent strategist, consultant, and instructional designer.
My doctor put me on a maintenance (reduced) dose of Revlimid for 3 months while I was working. I did not notice any significant change in chemo brain during that period.
I have found that I still fall into lapses where I stare at data for 20 or 30 minutes without making progress, but I have found that a 45 minute nap clears that up, and I am good for another 2-3 hours. Exercise also helps, but the bone damage I sustained makes that more difficult than a nap.
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Sailor Mike - Name: Mike Verla
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 62
Re: Chemo brain - what to expect & will it go away?
Ah, that old chemo brain and whether it is real, or not. It is now considered to be a real side effect of cancer and its treatment. I've always had some problem with letter and number reversals when writing or when dialing phone numbers. This got worse while on Revlimid and dex and after the ASCT. It gradually improved after the ASCT while I wasn't on any maintenance. But, I did notice that I was having more problems with word retrieval when speaking and writing and with remembering people's names. Again, is this due to the after effects of treatment and the cancer, or age related, or both?
I was a physical therapist working for a large health system that was on the leading edge of electronic medical records (ECM). When ECM was instituted in my department, I found that I was having a lot of problems learning the system and doing my daily documentation. I've always had an easy time learning new systems, even digital ones, in the past. It was so bad that I did all of my evaluations of new patients on paper and then transferred my notes into a complete document on the computer. This took hours and hours because of the word retrieval problems and having to closely edit my work for word and number reversals. My 8 hour day became 12+ hours daily. I was so fatigued from all of the time that I spent at work that I had no personal life.
Then I relapsed about 3 years post ASCT and restarted Revlimid and dex. Things got worse at work and I decided to look into retiring. I was going to be turning 66 within a few months. I hadn't planned on retiring so soon because I loved what I was doing, I specialized in treating people with cancer. But, the chemo brain made me rethink my plans.
I retired 2 years ago the end of this month and am so glad that I did. The chemo brain issues make some tasks difficult because of the word finding problems and some problems with memory. It's good that my iPhone has a notes app on it. It is well used by me for all kinds of reminders and my grocery shopping lists. But, I do the occasional guest lecture in my field at the PT programs in my area and find that, if I don't have really good notes to refer to, I can run into some problems. I used to have notes that I could glance at occasionally to keep me on track, but rarely referred to them. Once I started on a topic, the information would just flow and I could easily change direction depending on questions coming from the students. Now, it's not easy at all. But, obviously good enough that I keep getting invited to speak.
A psychologist who came to speak to my support group a couple of years ago treats people with chemo brain. She recommended that we do some of the mental games that are available to try to keep our brains functioning and sharp. I play word games with a group of my neighbors once a month. I love doing this, but have noticed that I'm not as quick as I once was with some of them. I'm still creative in my head, but getting those thoughts out is slower and more difficult.
MikeB, thanks for starting this topic,
Nancy in Phila
I was a physical therapist working for a large health system that was on the leading edge of electronic medical records (ECM). When ECM was instituted in my department, I found that I was having a lot of problems learning the system and doing my daily documentation. I've always had an easy time learning new systems, even digital ones, in the past. It was so bad that I did all of my evaluations of new patients on paper and then transferred my notes into a complete document on the computer. This took hours and hours because of the word retrieval problems and having to closely edit my work for word and number reversals. My 8 hour day became 12+ hours daily. I was so fatigued from all of the time that I spent at work that I had no personal life.
Then I relapsed about 3 years post ASCT and restarted Revlimid and dex. Things got worse at work and I decided to look into retiring. I was going to be turning 66 within a few months. I hadn't planned on retiring so soon because I loved what I was doing, I specialized in treating people with cancer. But, the chemo brain made me rethink my plans.
I retired 2 years ago the end of this month and am so glad that I did. The chemo brain issues make some tasks difficult because of the word finding problems and some problems with memory. It's good that my iPhone has a notes app on it. It is well used by me for all kinds of reminders and my grocery shopping lists. But, I do the occasional guest lecture in my field at the PT programs in my area and find that, if I don't have really good notes to refer to, I can run into some problems. I used to have notes that I could glance at occasionally to keep me on track, but rarely referred to them. Once I started on a topic, the information would just flow and I could easily change direction depending on questions coming from the students. Now, it's not easy at all. But, obviously good enough that I keep getting invited to speak.
A psychologist who came to speak to my support group a couple of years ago treats people with chemo brain. She recommended that we do some of the mental games that are available to try to keep our brains functioning and sharp. I play word games with a group of my neighbors once a month. I love doing this, but have noticed that I'm not as quick as I once was with some of them. I'm still creative in my head, but getting those thoughts out is slower and more difficult.
MikeB, thanks for starting this topic,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Chemo brain - what to expect & will it go away?
My chemo brain began the night I was admitted to the ER. Tom Brokaw made the comment that he believes, in retrospect, that he was hallucinating. Thank God my wife was there with me at the ER. I can sort of piece together about 20 minutes out of the 28 hour ordeal. I had a fever, severe shakes, "attached" to the porcelain throne, severely anemic, had a massive systemic infection and, unbeknownst to me at the time, I was riddled with lytic lesions and only 12% healthy plasma cells.
Any one of those symptoms probably could have produced memory fog. Then they added pain meds for my severe bone pain. I'm not used to pain meds. I have had to almost totally rely on my wife to relay the events of that night and the next couple of days in the hospital.
After release from the hospital, they started my Revlimid, Velcade, and dex (RVD) protocol and, although it never did help, they insisted I continue on the Oxycontin (oxycodone). Following the first RVD treatment, I went to sling my 5 pound backpack over my shoulder and the momentum sent me flying to the floor.
In my experience, the brain fog not only affected my mental acuity, but also my body awareness, which, by the way, had previously been excellent. I would have long conversations and not be able to remember anything I had said. Perhaps worse yet, I would have lengthy conversations expounding on some subject or another, and my wife would later inform me that I had basically been speaking gibberish.
I did begin to experience more moments of clarity (except on treatment days), but the fog was always present to one degree or another. Then I had my ASCT and the fog took over again. Today I am 2 years post transplant and almost 1 1/2 years myeloma med-free. The peripheral neuropathy (PN) is almost non existent. The back pain is much better, but the fog still comes and goes.
As others have mentioned, sleep helps, though, admittedly, sleep is a difficult commodity to come by. Exercise also helps, though that too is often difficult to muster.
MikeB, thanks for starting this thread! I wish I'd had this info when I was going through it.
Aloha
Daniel
Any one of those symptoms probably could have produced memory fog. Then they added pain meds for my severe bone pain. I'm not used to pain meds. I have had to almost totally rely on my wife to relay the events of that night and the next couple of days in the hospital.
After release from the hospital, they started my Revlimid, Velcade, and dex (RVD) protocol and, although it never did help, they insisted I continue on the Oxycontin (oxycodone). Following the first RVD treatment, I went to sling my 5 pound backpack over my shoulder and the momentum sent me flying to the floor.
In my experience, the brain fog not only affected my mental acuity, but also my body awareness, which, by the way, had previously been excellent. I would have long conversations and not be able to remember anything I had said. Perhaps worse yet, I would have lengthy conversations expounding on some subject or another, and my wife would later inform me that I had basically been speaking gibberish.
I did begin to experience more moments of clarity (except on treatment days), but the fog was always present to one degree or another. Then I had my ASCT and the fog took over again. Today I am 2 years post transplant and almost 1 1/2 years myeloma med-free. The peripheral neuropathy (PN) is almost non existent. The back pain is much better, but the fog still comes and goes.
As others have mentioned, sleep helps, though, admittedly, sleep is a difficult commodity to come by. Exercise also helps, though that too is often difficult to muster.
MikeB, thanks for starting this thread! I wish I'd had this info when I was going through it.
Aloha
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Chemo brain - what to expect & will it go away?
Thanks a lot for the replies to my questions about chemo brain here. I thought that I might strike a common chord.
I can sure relate to the problems you've described, especially problems in remembering words and names. And problems concentrating and multi-tasking (or, more officially, executive planning). I guess I didn't realize just how much multi-tasking we normally do without even thinking about it, until I started experiencing problems. So often I'll be doing one task and will see something that reminds me of another task I need to do as soon as I finish the first one. But then, when I finish the first one, I forget all about the second one.
I had a small chemo brain attack even while writing my original post in this thread. I'd meant to also ask what kinds of things you do to help minimize problems due to chemo brain. But I forgot to ask that question!
Fortunately, several of you mentioned "workarounds" you've come up with, without me asking that. In addition to those you've mentioned, I also find myself making lots more lists. (I guess I should have made a list of the questions I meant to ask in my post.)
Several of you made the explicit point that you think chemo brain is real. I completely agree!
I've done a little bit of reading about it, and it's not all that long ago that the medical (and oncology) community stopped poo-pooing the idea of chemo brain - only 15 or so years ago. Their more official name for it is "cognitive impairment associated with chemotherapy and cancer." It now is an active field of research, and there are a number of interesting questions related to chemo brain that are being explored.
A fairly recent paper from gives a good review of the current state of research into chemo brain, if you're interested. I had two main takeaways from the paper: (1) chemo brain is a real phenomenon; and (2) there are still many open questions about how it is caused, why some people experience it more than others, etc.
Halle C. F. Moore, "An overview of chemotherapy-related cognitive dysfunction, or 'chemobrain', Oncology, September 2014 (full text [registration required]; page 1, page 2, and page 3 at Google)
Thanks again to those of you who replied. I hope this discussion has been helpful. (It helps me to know I'm not the only one with these problems!)
Mike
I can sure relate to the problems you've described, especially problems in remembering words and names. And problems concentrating and multi-tasking (or, more officially, executive planning). I guess I didn't realize just how much multi-tasking we normally do without even thinking about it, until I started experiencing problems. So often I'll be doing one task and will see something that reminds me of another task I need to do as soon as I finish the first one. But then, when I finish the first one, I forget all about the second one.
I had a small chemo brain attack even while writing my original post in this thread. I'd meant to also ask what kinds of things you do to help minimize problems due to chemo brain. But I forgot to ask that question!
Fortunately, several of you mentioned "workarounds" you've come up with, without me asking that. In addition to those you've mentioned, I also find myself making lots more lists. (I guess I should have made a list of the questions I meant to ask in my post.)
Several of you made the explicit point that you think chemo brain is real. I completely agree!
I've done a little bit of reading about it, and it's not all that long ago that the medical (and oncology) community stopped poo-pooing the idea of chemo brain - only 15 or so years ago. Their more official name for it is "cognitive impairment associated with chemotherapy and cancer." It now is an active field of research, and there are a number of interesting questions related to chemo brain that are being explored.
A fairly recent paper from gives a good review of the current state of research into chemo brain, if you're interested. I had two main takeaways from the paper: (1) chemo brain is a real phenomenon; and (2) there are still many open questions about how it is caused, why some people experience it more than others, etc.
Halle C. F. Moore, "An overview of chemotherapy-related cognitive dysfunction, or 'chemobrain', Oncology, September 2014 (full text [registration required]; page 1, page 2, and page 3 at Google)
Thanks again to those of you who replied. I hope this discussion has been helpful. (It helps me to know I'm not the only one with these problems!)
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Chemo brain - what to expect & will it go away?
Thanks Mikeb for starting this discussion. Sorry I waited a little too long to add my comments, but I was without a computer for about a week and got behind on reading the Beacon.
For a while I thought I was the only one experiencing this, but your post and the replies have convinced me that I am not. I often experience losing short term memory. Also, if interrupted during a conversation, I can forget my train of thought. My wife tells me that I often forget what she tells me. Of course, this may also be part of the marriage experience. It is more difficult for me to multitask than before diagnosis. Fortunately, I have had no serious attacks of chemo brain.
Thanks for everyone's input.
JeffA
For a while I thought I was the only one experiencing this, but your post and the replies have convinced me that I am not. I often experience losing short term memory. Also, if interrupted during a conversation, I can forget my train of thought. My wife tells me that I often forget what she tells me. Of course, this may also be part of the marriage experience. It is more difficult for me to multitask than before diagnosis. Fortunately, I have had no serious attacks of chemo brain.
Thanks for everyone's input.
JeffA
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