I wanted to ask if anyone has had experience with a multiple myeloma patient having impaired cognitive function from any treatments or drugs?
My mom has been on the new drug daratumumab for about 5 weeks now, combined with Kyprolis, and has been taking the lowest dose of Marinol for her appetite and nausea. Since about 2 weeks ago, her cognitive function has severely declined. Her myeloma factors are improving but other things seem to be going downhill. It is more than just "chemo brain." She is having trouble doing simple things like chewing, swallowing, even forming sentences that make sense, and has excessive fatigue.
Has anyone had experience with this or know what this side effect is from?
Over the course of her myeloma treatments, we know her tolerance for anything is very sensitive. We suspect it’s the Marinol, so we have eliminated that since about 3 days ago, but no significant improvement. Her oncologist recommended an MRI to evaluate further.
My mother was initially diagnosed in 2008 at age 59, went into remission for about 5-6 years, then just this past fall of 2015, it came back and we have been in an uphill battle with the myeloma again. We are so happy daratumumab was recently approved and we hope it is working, but it has been excruciating watching her go through these various side effects. We don’t know if it is the chemo drugs or something else she is taking to counteract other things, that is causing her poor cognitive function.
Any advice or ideas would be greatly appreciated!
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danielles - Name: Danielle S.
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: 2008
- Age at diagnosis: 59
Re: Cognitive side effects from drugs?
Danielles,
You might want to read the information at the Kyprolis website (link), especially with regard to brain problems, fatigue and confusion.
I also note in the above link that Kyprolis can lower potassium levels (hypokalemia). I once experienced hypokalemia as a result of a blood pressure medication side effect . I can personally attest that hypokalemia can make you extremely disoriented and incoherent – to the point I was taken to the hospital in an ambulance since everyone thought I had experienced a stroke due to my utterly confused state. So you might also want to have the doc run a comprehensive metabolic panel and check her electrolyte levels.
I'm not aware of any reported cognitive side effects with daratumumab, but you may want to scour the literature yourself.
You might want to read the information at the Kyprolis website (link), especially with regard to brain problems, fatigue and confusion.
I also note in the above link that Kyprolis can lower potassium levels (hypokalemia). I once experienced hypokalemia as a result of a blood pressure medication side effect . I can personally attest that hypokalemia can make you extremely disoriented and incoherent – to the point I was taken to the hospital in an ambulance since everyone thought I had experienced a stroke due to my utterly confused state. So you might also want to have the doc run a comprehensive metabolic panel and check her electrolyte levels.
I'm not aware of any reported cognitive side effects with daratumumab, but you may want to scour the literature yourself.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Cognitive side effects from drugs?
Hi Danielle,
I just want to second Multibilly's suggestion to have your mother's potassium level checked. I would go further, as Multibilly also suggests, and ask for her electrolytes in general to be checked -- not just her potassium -- as an imbalance in other electrolytes also could be an issue.
You may find the discussions in these forum threads to be helpful:
"Husband newly diagnosed after suffering delirium" (started June 28, 2013)
"Delirium may be returning" (started Sep 23, 2015)
They include some tips and references that could help.
A couple of other possibilities to consider as the source of your mother's issues would be:
I just want to second Multibilly's suggestion to have your mother's potassium level checked. I would go further, as Multibilly also suggests, and ask for her electrolytes in general to be checked -- not just her potassium -- as an imbalance in other electrolytes also could be an issue.
You may find the discussions in these forum threads to be helpful:
"Husband newly diagnosed after suffering delirium" (started June 28, 2013)
"Delirium may be returning" (started Sep 23, 2015)
They include some tips and references that could help.
A couple of other possibilities to consider as the source of your mother's issues would be:
- A urinary tract or bladder infection; several people have pointed out that these sorts of infections can be associated with cognitive side effects
- Other medications besides her myeloma therapies, particularly medications for sleep or anxiety (you already appear to be exploring this angle, as you have mentioned Marinol; but maybe there are other medications that are causing issues).
Re: Cognitive side effects from drugs?
Thank you so much Multibilly and Cheryl G for your thoughts and suggestions. Her doctor did determine today that she has very high calcium and very low potassium, along with high blood pressure, and a UTI. Exactly the things you both thought it might be. I'm so grateful for your feedback. She is being admitted to the hospital to treat all of those things. I hope that getting her levels back in balance makes her feel better. Thanks again.
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danielles - Name: Danielle S.
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: 2008
- Age at diagnosis: 59
Re: Cognitive side effects from drugs?
Hi Danielle,
Glad to hear that the problems ended up being mostly with her blood chemistry and that a brain MRI wasn't required!
Potassium IVs can be pretty painful, even at a slow drip rate (feels a bit like battery acid being put into your arm). You may want to ask for a local pain killer to be administered with the IV.
Glad to hear that the problems ended up being mostly with her blood chemistry and that a brain MRI wasn't required!
Potassium IVs can be pretty painful, even at a slow drip rate (feels a bit like battery acid being put into your arm). You may want to ask for a local pain killer to be administered with the IV.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Cognitive side effects from drugs?
My wife is also experiencing cognitive problems from something. They started about autologous transplant Day +4 and have gotten steadily worse. She was given melphalan for the heavy dose chemo on the first (April 18, 2016) and second days of her hospital stay. The transplant actually occurred on the third day of her hospital stay.
We are now on Day +16. CAT scan, EEG, lumbar puncture and many blood tests have not led to a resolution. Doctors are puzzled. In fact, the confusion has gotten worse. Most of the time, my wife is in a semi-dream state, talking with people who are not here, moving her arms / hands / fingers as in doing some task (which I described to her during one of her lucid moments, but she could not think of what she might have been doing). Her counts are almost high enough to be discharged. But since she is experiencing some type of delirium most of the time, her doctor says she will remain in the hospital for another week +.
Not sure if the following is related in anyway to the mental confusion: She has also failed to begin eating. In the past week+ she has only eaten 3 teaspoons of applesauce and two teaspoons of Rice Krispies. She is getting fed via IV.
Anyone else seeing this type of cognitive problem?
There were no problems of this type when she was admitted.
Thanks in advance for any ideas.
We are now on Day +16. CAT scan, EEG, lumbar puncture and many blood tests have not led to a resolution. Doctors are puzzled. In fact, the confusion has gotten worse. Most of the time, my wife is in a semi-dream state, talking with people who are not here, moving her arms / hands / fingers as in doing some task (which I described to her during one of her lucid moments, but she could not think of what she might have been doing). Her counts are almost high enough to be discharged. But since she is experiencing some type of delirium most of the time, her doctor says she will remain in the hospital for another week +.
Not sure if the following is related in anyway to the mental confusion: She has also failed to begin eating. In the past week+ she has only eaten 3 teaspoons of applesauce and two teaspoons of Rice Krispies. She is getting fed via IV.
Anyone else seeing this type of cognitive problem?
There were no problems of this type when she was admitted.
Thanks in advance for any ideas.
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RobertEMaul - Name: Robert Maul
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: Nov. 18, 2015
- Age at diagnosis: 67
Re: Cognitive side effects from drugs?
Is she receiving medications for nausea? If so, which ones?
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Cognitive side effects from drugs?
Hello Robert, and welcome to the forum.
I'm very sorry to hear about what your wife is going through.
If you have not already done so, please go back and read the previous postings in this thread, including rumnting's recent post. There is a lot of information that could be useful for resolving your wife's problem.
Given what you have said about her not eating, I really wonder whether the issue is an electrolyte imbalance. If this has not been thoroughly investigated by her doctors, please do everything you can to make sure it is.
I also would check carefully to see whether an infection of some sort is not present and potentially causing issues.
I am sure a solution will eventually be found to your wife's problem. When it is, please let us know what it was, since the information might help others in the future.
Good luck!
I'm very sorry to hear about what your wife is going through.
If you have not already done so, please go back and read the previous postings in this thread, including rumnting's recent post. There is a lot of information that could be useful for resolving your wife's problem.
Given what you have said about her not eating, I really wonder whether the issue is an electrolyte imbalance. If this has not been thoroughly investigated by her doctors, please do everything you can to make sure it is.
I also would check carefully to see whether an infection of some sort is not present and potentially causing issues.
I am sure a solution will eventually be found to your wife's problem. When it is, please let us know what it was, since the information might help others in the future.
Good luck!
Re: Cognitive side effects from drugs?
Looking at what medications she is taking was my first thought as to what could be causing the problem. If she has had nausea, one of the medications that is given often is Ativan. When I had my transplant, they gave me Ativan for the actual transplant procedure for anxiety. Then they gave it to me 2 more times for nausea.
The first time was great! I had a really nice trip with great hallucinations. The second two times were horrible! I found myself screaming at people who weren't there and had really bad hallucinations. I refused it after that and have had it put on my list of allergies. For some reason the medical people like to prescribe it for all sorts of things that might be anxiety provoking.
It also could be that her electrolytes are off from not eating and possibly if she also has diarrhea and vomiting.
Keep pushing them to look for the reason that her cognitive status is decreasing.
All the best to your wife and to you during this challenging time,
Nancy in Phila
The first time was great! I had a really nice trip with great hallucinations. The second two times were horrible! I found myself screaming at people who weren't there and had really bad hallucinations. I refused it after that and have had it put on my list of allergies. For some reason the medical people like to prescribe it for all sorts of things that might be anxiety provoking.
It also could be that her electrolytes are off from not eating and possibly if she also has diarrhea and vomiting.
Keep pushing them to look for the reason that her cognitive status is decreasing.
All the best to your wife and to you during this challenging time,
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
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