I am wondering how often cognitive impairment occurs due either to multiple myeloma itself or by a bone marrow transplant as treatment. It seems that there are few posts on the forum regarding this topic, and most of them refer to older patients. My husband, however, is only 54.
Sixteen months ago my husband was admitted to the hospital on an emergency basis, beginning the saga that has led to this point. About two months before that, when we were living out of the country with his family, he experienced a marked cognitive decline, to the extent that it resembled severe dementia or Alzheimer's. When we returned to seek medical care and he had emergency surgery to unblock his kidney, and then two months later a splenectomy to remove his dangerously enlarged spleen, I assumed that the strain on his body had caused the cognitive problems, and the doctors said that was likely the case.
It was true that he improved to a state of what would more appropriately be called mild cognitive impairment. However, after 11 months of three different kinds of chemo, he continues to experience problems with short-term memory and cognition, as well as a slightly altered personality. It has not appeared to change much across different treatments, so I suspect it is more the disease than the treatments.
I have just read a study that, while small, found that multiple myeloma patients may experience cognitive problems as a result of an auto transplant, and that the effects may or may not diminish with time. As we are heading to the the Mayo Clinic today to begin the transplant process, I am not thrilled to hear that he could worsen.
Of course I plan to discuss this with the doctor, but I find the personal experiences of patients and caregivers to be a valuable counterpoint to what medical professionals may have to say.
Has anyone seen this type of problem get better after a transplant beats back the cancer?
I also welcome any tips for respectfully dealing with a person who is an adult, but whose memory problems are worse than they would like to admit.
My husband doesn't really want to talk about it with the doctor, but I feel it's important because it could endanger him. He is not capable of accurately answering questions about his medical history, nor remembering medical instructions, so I fear leaving him alone, even with medical professionals. For example, once a nurse wanted to give him an injection that the doctor had specifically said he should not receive because it would put him at risk of blood clots. Somehow a previous order was left open in the chart in error, or she misread it. I had to intervene because he had no understanding of what the drug was or memory of the doctor saying he should not receive it, and was perfectly happy to let her administer it.
We have a seven year-old son who will be with us the whole time because we don't know anyone near Mayo, so I will have to leave my husband at some point because there's no point in making a kid sit around cooped up for hours waiting for uneventful procedures like transfusions to take place.
Any suggestions to communicate to the nurses that they need to relay any information or instructions to me, without talking about him in front of him in a manner that is insulting? Will they be naturally inclined to do that since I'm his official caregiver that he is required to have for the process?
Thanks in advance for any wisdom you may have to offer.
Forums
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mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Cognitive impairment in multiple myeloma patients
Good morning,
So sorry for all you are going through. I read these forums everyday looking for anything that is a little similar to my husband. I know everyone is very different, but there are things that are similar. I think we can gain some strength from talking to each other.
My husband seems to have intermittent lapses of forgetfulness. Very strange things – I can't explain it, not all the time. He has had a transplant, and is 7 months out from it. Did well with his treatment and transplant, but the memory thing scares me also. I worry about his decision making sometimes. His is very random. I'm not sure he always realizes it.
I wish you the very best and hope doctors can give you some answers.
So sorry for all you are going through. I read these forums everyday looking for anything that is a little similar to my husband. I know everyone is very different, but there are things that are similar. I think we can gain some strength from talking to each other.
My husband seems to have intermittent lapses of forgetfulness. Very strange things – I can't explain it, not all the time. He has had a transplant, and is 7 months out from it. Did well with his treatment and transplant, but the memory thing scares me also. I worry about his decision making sometimes. His is very random. I'm not sure he always realizes it.
I wish you the very best and hope doctors can give you some answers.
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nanaofbkma - Name: Deb
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 65
Re: Cognitive impairment in multiple myeloma patients
A great many things can cause cognitive impairment in this process. The disease itself, of course, can. However, treating the disease generally improves the impairment.
The problem is that 'chemo-brain' is real. Don't let anybody tell you that it's not. And it can last awhile after treatment ends. Just because your husband's impairment seems to have lasted through several different treatments doesn't mean that the treatments aren't responsible.
This sort of cognitive impairment is frustrating, and it's extremely frustrating for the patient. I know. What is truly frustrating is having to deal with it and being told, by doctors who aren't keeping up, that there is no such thing as 'chemo-brain,' or that it's 'just age,' or depression, or any number of other things that don't actually address the problem.
About the transplant ... the best thing that can be done for cognitive impairment caused by the disease itself is to treat the disease. The best thing to do for 'chemo-brain' and the 'brain fog' and memory problems that come with it is to, well, have a good laugh and develop coping strategies. For me, that meant that I NEVER lock the car unless the keys are in my hand, I have sticky notes all over the place, I keep my electronic memory with me at all times, and I make myself write every single day, for at least an hour, using as many big words as I can remember, so that I CAN remember.
It is frustrating. I wish you and your husband the very best of good luck and blessings.
The problem is that 'chemo-brain' is real. Don't let anybody tell you that it's not. And it can last awhile after treatment ends. Just because your husband's impairment seems to have lasted through several different treatments doesn't mean that the treatments aren't responsible.
This sort of cognitive impairment is frustrating, and it's extremely frustrating for the patient. I know. What is truly frustrating is having to deal with it and being told, by doctors who aren't keeping up, that there is no such thing as 'chemo-brain,' or that it's 'just age,' or depression, or any number of other things that don't actually address the problem.
About the transplant ... the best thing that can be done for cognitive impairment caused by the disease itself is to treat the disease. The best thing to do for 'chemo-brain' and the 'brain fog' and memory problems that come with it is to, well, have a good laugh and develop coping strategies. For me, that meant that I NEVER lock the car unless the keys are in my hand, I have sticky notes all over the place, I keep my electronic memory with me at all times, and I make myself write every single day, for at least an hour, using as many big words as I can remember, so that I CAN remember.
It is frustrating. I wish you and your husband the very best of good luck and blessings.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Cognitive impairment in multiple myeloma patients
There is a recent study (full text, PDF) that suggests that a long-term use of Benadryl (diphenhydramine) may increase the risk of dementia. I think most of the infusion therapies that I have ever had have been preceded by a Benadryl infusion.
I also knew an elderly fellow who had severe dementia after two autologous stem cell transplants. However, prior to his transplants, I believe that he only had incipient dementia. He seemed to be distinctly worse afterwards. Transplants are supposed to be limited for those over 65, but this fellow looked about 70 or more. His caregivers basically terminated him by pulling his access to dialysis.
I think also poor sleep (insufficient REM time) might also cause brain fogging that could appear similar to dementia symptoms.
Good Luck,
Dave
I also knew an elderly fellow who had severe dementia after two autologous stem cell transplants. However, prior to his transplants, I believe that he only had incipient dementia. He seemed to be distinctly worse afterwards. Transplants are supposed to be limited for those over 65, but this fellow looked about 70 or more. His caregivers basically terminated him by pulling his access to dialysis.
I think also poor sleep (insufficient REM time) might also cause brain fogging that could appear similar to dementia symptoms.
Good Luck,
Dave
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DaveNV
Re: Cognitive impairment in multiple myeloma patients
Hi mplsterrapin,
This is WAY above my pay grade, but I remember reading about hyperviscosity syndrome in patients with myeloma. As I recall, this makes the blood "thicker" which means the brain doesn't get enough oxygen which leads to the dementia. Plasmapheresis can help correct the problem. I can't remember if the hyperviscosity was a result of the myeloma, or the treatments.
Hope that helps.
Lyn
This is WAY above my pay grade, but I remember reading about hyperviscosity syndrome in patients with myeloma. As I recall, this makes the blood "thicker" which means the brain doesn't get enough oxygen which leads to the dementia. Plasmapheresis can help correct the problem. I can't remember if the hyperviscosity was a result of the myeloma, or the treatments.
Hope that helps.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Cognitive impairment in multiple myeloma patients
Hi Ari,
Sorry to hear about your husband's cognitive issues. These kinds of problems affect lots of multiple myeloma patients, whether they are older or not. As you may have seen, there are several threads on this general topic in the Beacon forum. I did a quick search on "chemo brain" and came up with these:
https://myelomabeacon.org/forum/search.php?keywords=Chemo+brain&terms=all&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
You'll see in those a wide variety of problems mentioned, as well as some "workarounds" that people use. Chemo brain is a real and very frustrating problem to lots of us. I've been fortunate in that the degree of my cognitive impairment seems to have lessened as my multiple myeloma treatments have been reduced.
You asked a specific question that none of the other responders (who have given you good information) have addressed - how to deal with nurses to make sure you are getting key information because your husband may not remember it. I think this is a situation many oncology nurses are familiar with. So I would suggest buttonholing one of the nurses the next time your husband has an appointment, and explaining the situation to him/her. Or call them. They should make a note in your husand's file about this.
Best wishes to your husband and to you. Please keep us posted on how things go.
Mike
Sorry to hear about your husband's cognitive issues. These kinds of problems affect lots of multiple myeloma patients, whether they are older or not. As you may have seen, there are several threads on this general topic in the Beacon forum. I did a quick search on "chemo brain" and came up with these:
https://myelomabeacon.org/forum/search.php?keywords=Chemo+brain&terms=all&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
You'll see in those a wide variety of problems mentioned, as well as some "workarounds" that people use. Chemo brain is a real and very frustrating problem to lots of us. I've been fortunate in that the degree of my cognitive impairment seems to have lessened as my multiple myeloma treatments have been reduced.
You asked a specific question that none of the other responders (who have given you good information) have addressed - how to deal with nurses to make sure you are getting key information because your husband may not remember it. I think this is a situation many oncology nurses are familiar with. So I would suggest buttonholing one of the nurses the next time your husband has an appointment, and explaining the situation to him/her. Or call them. They should make a note in your husand's file about this.
Best wishes to your husband and to you. Please keep us posted on how things go.
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: Cognitive impairment in multiple myeloma patients
Thanks for your thoughtful responses. I did ask the doctor at Mayo about this issue, and while we did not have a long discussion about it, he said that he has often seen patients regain their memory function when their disease is brought into check. So that at least gave me some hope. Also I think he can see clearly that my husband has much more difficulty taking in what he is saying, and my husband told the doctor to call me rather than him with any questions or information, so at least as far as the doctor overseeing everything is concerned, he understands that he needs to include me in anything of importance.
However, our trip to Mayo did include quite the unexpected surprise. The three days of pre-transplant tests went just fine, and we had all our classes and one-on-one education sessions and our schedule of how the six weeks would more or less go unless there are complications. We were just waiting to have a relatively brief appointment with the doctor at 4:30 on Friday afternoon to sign consent forms and make sure everyone was on the same page before he wrote the final orders. The nurse coordinator left the room and said the doc would be in shortly, but he didn't come for over an hour, and when he did he brought a colleague from another hematological oncology specialty with him.
It turned out that right before our appointment time, the pathologist called to say that my husband had developed a new genetic mutation, associated with myeloid cancer, that hadn't been there in the previous bone marrow biopsy. The myeloid disorder specialists had been consulted previously (because on top of the myeloma he has other abnormalities that have never been seen before) and had cleared him to go ahead with an auto transplant under the myeloma specialist's care. However, now there is too great a chance that he also has a second, separate cancer, as they had originally feared but not been able to prove conclusively. An auto transplant would be useless against that type of cancer, so he has to wait two months to see how it develops.
We came home and he is supposed to do 8 weeks of Darzalex (daratumumab) and Revlimid (because the regimen he had been on lost effectiveness), then return for another bone marrow biopsy so that the group they have convened can decide whether he needs an auto or allo transplant.
It was hard to wrap our minds around not doing the transplant after we had geared ourselves up and were setting up housing in Rochester and had shut down our remodeling business and cancelled insurance on the vehicle we were leaving at home, etc. But obviously we wouldn't want him to go through that if it were not going to be effective, so I guess there's nothing to do but wait.
It's hard to believe that he has such a complicated case that 18 months after he first fell ill, it is still questionable exactly what is wrong with him and what course of treatment would be best. We did have a wonderful experience at Mayo and felt very good about our decision to seek a second opinion there and switch to their care.
However, our trip to Mayo did include quite the unexpected surprise. The three days of pre-transplant tests went just fine, and we had all our classes and one-on-one education sessions and our schedule of how the six weeks would more or less go unless there are complications. We were just waiting to have a relatively brief appointment with the doctor at 4:30 on Friday afternoon to sign consent forms and make sure everyone was on the same page before he wrote the final orders. The nurse coordinator left the room and said the doc would be in shortly, but he didn't come for over an hour, and when he did he brought a colleague from another hematological oncology specialty with him.
It turned out that right before our appointment time, the pathologist called to say that my husband had developed a new genetic mutation, associated with myeloid cancer, that hadn't been there in the previous bone marrow biopsy. The myeloid disorder specialists had been consulted previously (because on top of the myeloma he has other abnormalities that have never been seen before) and had cleared him to go ahead with an auto transplant under the myeloma specialist's care. However, now there is too great a chance that he also has a second, separate cancer, as they had originally feared but not been able to prove conclusively. An auto transplant would be useless against that type of cancer, so he has to wait two months to see how it develops.
We came home and he is supposed to do 8 weeks of Darzalex (daratumumab) and Revlimid (because the regimen he had been on lost effectiveness), then return for another bone marrow biopsy so that the group they have convened can decide whether he needs an auto or allo transplant.
It was hard to wrap our minds around not doing the transplant after we had geared ourselves up and were setting up housing in Rochester and had shut down our remodeling business and cancelled insurance on the vehicle we were leaving at home, etc. But obviously we wouldn't want him to go through that if it were not going to be effective, so I guess there's nothing to do but wait.
It's hard to believe that he has such a complicated case that 18 months after he first fell ill, it is still questionable exactly what is wrong with him and what course of treatment would be best. We did have a wonderful experience at Mayo and felt very good about our decision to seek a second opinion there and switch to their care.
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mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Cognitive impairment in multiple myeloma patients
I am on Velcade (subcutaneous) twice a week. My dexamethasone dose has been reduced from 40 mg to 20 mg a couple of months ago. I was experiencing some "brain fog" and had hoped that the reduction in the dex dose would help with that. It hasn't (but it helped eliminate some of the "moon face"!).
I, too, have sticky notes everywhere, and my iPhone is full of reminders, etc. If I don't write something down when I think of it, then it vanishes within 30 seconds! I am 68 and realize that people get forgetful – not remembering why they went to a room, etc. I was doing this 10 years ago. I think our brains get full.
My latest bone marrow biopsy showed that I am in remission. I haven't talked to the oncologist / hematologist but saw the results on my e-link. I meet with him on September 13 to see what the maintenance plan is. I am concerned about dementia since my two sisters (80 and 77 years of age) are developing serious dementia – serious enough that their children are concerned about Alzheimers. I hope and pray my cognitive impairment is the multiple myeloma treatment and that the dementia experienced by my sisters is going to skip right on over me. It is a sad thing to watch in them.
I, too, have sticky notes everywhere, and my iPhone is full of reminders, etc. If I don't write something down when I think of it, then it vanishes within 30 seconds! I am 68 and realize that people get forgetful – not remembering why they went to a room, etc. I was doing this 10 years ago. I think our brains get full.
My latest bone marrow biopsy showed that I am in remission. I haven't talked to the oncologist / hematologist but saw the results on my e-link. I meet with him on September 13 to see what the maintenance plan is. I am concerned about dementia since my two sisters (80 and 77 years of age) are developing serious dementia – serious enough that their children are concerned about Alzheimers. I hope and pray my cognitive impairment is the multiple myeloma treatment and that the dementia experienced by my sisters is going to skip right on over me. It is a sad thing to watch in them.
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Brenda Crawford - Name: Brenda Crawford
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2/16/16
- Age at diagnosis: 67
Re: Cognitive impairment in multiple myeloma patients
Hello All,
I agree that chemo brain and cognitive impairment can really be a problem. I encountered that after my stem cell transplant and wrote a column about it here at the Beacon,
"Northern Lights: Weather Report – Fog And Freezing Rain," The Myeloma Beacon, September 13, 2012
When I re-read it, I can see that I still follow some of the suggestions there. I try to stay really organized with a daytimer, and work and volunteer in areas that require me to puzzle things out. Sometimes I make mistakes, so I have to double check my work. I make a note of what appointments or meetings I have in a week so as not to forget about those!
I agree that chemo brain and cognitive impairment can really be a problem. I encountered that after my stem cell transplant and wrote a column about it here at the Beacon,
"Northern Lights: Weather Report – Fog And Freezing Rain," The Myeloma Beacon, September 13, 2012
When I re-read it, I can see that I still follow some of the suggestions there. I try to stay really organized with a daytimer, and work and volunteer in areas that require me to puzzle things out. Sometimes I make mistakes, so I have to double check my work. I make a note of what appointments or meetings I have in a week so as not to forget about those!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Cognitive impairment in multiple myeloma patients
My husband "Tinker" was diagnosed October 2014 at the same time my mom was on hospice from cervical cancer that moved to her lungs. He was his own donor for a stem cell transplant in January 2015 and has been on Revlimid 21 days on 7 days off until the past few months, when he started having rashes during his cycle. They lowered his dose but he still had a rash.
My biggest concern is his mind. He can't remember anything anymore, and everyday around 4 p.m. he starts getting irritated and hearing things that we don't hear. He thinks we keep secrets from him and that we don't care about him.
Those of us who are there daily get the worst of it, the ones who call or drop in occasionally don't see it.
He is 60 years old.
My biggest concern is his mind. He can't remember anything anymore, and everyday around 4 p.m. he starts getting irritated and hearing things that we don't hear. He thinks we keep secrets from him and that we don't care about him.
Those of us who are there daily get the worst of it, the ones who call or drop in occasionally don't see it.
He is 60 years old.
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Tinks girl
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