Has anyone experienced hallucinations after their weekly carfilzomib (Kyprolis) treatment? My mom is on heavy oxycontin for pain (30mg every 8 hours plus 10mg every 4 hours for breakthrough pain) and is on 12 mg dex on one day of her carfilzomib treatment. Last week I noticed that she was having really paranoid type thoughts and minor hallucinations after her day 2 chemo. It is getting really hard for her and the whole family. She is thinking we are all against her and that we are plotting to put her in a nursing home (her greatest fear). Someone is with her (within arms reach) all day and in the house all night. Twice she has gotten up in the night and fallen because she thought we (her children) were plotting to put her away. This period of paranoid thinking last for about two days after the first infusion (day 1, day 8, etc.). She also sees things and hears people talking about her. Please help! I asked the doctor but at the time I thought it was the high dose of oxycontin she was on.
Please please please help me! We live 200 miles from her chemo doctor and people around here just don't seem to know what to do. The doctors don't even recognize the meds she is on.
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Salamandah - Name: Amanda
- Who do you know with myeloma?: My mom
- When were you/they diagnosed?: November 2004
- Age at diagnosis: 58
Re: Kyprolis (carfilzomib) and hallucinations?
I'm really sorry to hear about the problems your mother is having, Amanda.
I checked the most common side effects for Kyprolis that are listed in the FDA-approved prescribing information for Kyprolis (see pages 11 and 12),
http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/202714lbl.pdf
and hallucinations are not on the list.
However, I did notice that there are a lot of side effects related to lowered mineral levels in the blood -- things like hypokalemia (low potassium), hypomagnesemia (low magnesium), hypophosphatemia (low phosphate), and hyponatremia (low sodium).
If I'm not mistaken, if a person has a significant imbalance in these sorts of minerals, it can lead to confusion and perhaps even hallucinations.
So you may want to request that your mother's blood be checked for these mineral levels.
All that having been said, the prescribing information for Oxycontin,
http://www.accessdata.fda.gov/drugsatfda_docs/label/2013/022272Orig1s014lbl.pdf
does mention hallucinations as a potential side effect, although it isn't mentioned as a common side effect.
Perhaps it's the combination of the Oxycontin and lowered mineral levels?
In any case, best of luck to you, your family, and particularly your mother. Please let us know what you find out.
I checked the most common side effects for Kyprolis that are listed in the FDA-approved prescribing information for Kyprolis (see pages 11 and 12),
http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/202714lbl.pdf
and hallucinations are not on the list.
However, I did notice that there are a lot of side effects related to lowered mineral levels in the blood -- things like hypokalemia (low potassium), hypomagnesemia (low magnesium), hypophosphatemia (low phosphate), and hyponatremia (low sodium).
If I'm not mistaken, if a person has a significant imbalance in these sorts of minerals, it can lead to confusion and perhaps even hallucinations.
So you may want to request that your mother's blood be checked for these mineral levels.
All that having been said, the prescribing information for Oxycontin,
http://www.accessdata.fda.gov/drugsatfda_docs/label/2013/022272Orig1s014lbl.pdf
does mention hallucinations as a potential side effect, although it isn't mentioned as a common side effect.
Perhaps it's the combination of the Oxycontin and lowered mineral levels?
In any case, best of luck to you, your family, and particularly your mother. Please let us know what you find out.
Re: Kyprolis (carfilzomib) and hallucinations?
It sounds like either her dose of Krypolis needs to be adjusted or maybe she needs a different treatment regimen. When I was in the hospital for my ASCT I was given Ativan. The first time I had very pleasurable hallucinations and enjoyed the drug, but after that the hallucinations were really scarey. I have had Ativan put on my list as my being allergic to it. Ativan is offered so freely during cancer treatment and it is hard to get people to agree to not giving it to you.
I hope that something is done about your mother's hallucinations quickly. Keep on the phone with her oncologist, with the nurse, with anyone at the cancer center who may be able to help. Also, contact the drug company and inquire about any reports of hallucinations like your mother's. They do respond to reports of adverse reactions to drugs and if they have any other reports they may be able to offer help.
Nancy in Phila
I hope that something is done about your mother's hallucinations quickly. Keep on the phone with her oncologist, with the nurse, with anyone at the cancer center who may be able to help. Also, contact the drug company and inquire about any reports of hallucinations like your mother's. They do respond to reports of adverse reactions to drugs and if they have any other reports they may be able to offer help.
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: Kyprolis (carfilzomib) and hallucinations?
I experienced what I think were hallucinations and paranoid thinking when on chemo but I have not been on carfilzomib. At the time, I thought that it was the dex that was causing this but because I was on multiple drugs, I never really knew the cause. It was not as extreme as your mom's and I was aware that I was having "crazy" thoughts. I was diagnosed as having had a panic attack and put on meds for anxiety. This pattern of thinking eventually went away.
. My mother-in-law exhibited behaviors similar to those you are seeing with your mom every time she had a bladder infection so you might also check for this as we learned this is common when older women have bladder infections. Infections of the blood can also cause psychotic symptoms. Like your mother, my mother-in-law blamed us for taking her things. Sometimes we were able to use distraction as a short term tool.
Let us know what you learn. I know how difficult this feels both for the patient and for the family member trying to help.
. My mother-in-law exhibited behaviors similar to those you are seeing with your mom every time she had a bladder infection so you might also check for this as we learned this is common when older women have bladder infections. Infections of the blood can also cause psychotic symptoms. Like your mother, my mother-in-law blamed us for taking her things. Sometimes we were able to use distraction as a short term tool.
Let us know what you learn. I know how difficult this feels both for the patient and for the family member trying to help.
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karenh - Name: Karen Hendrickson
- Who do you know with myeloma?: myself
- Age at diagnosis: 59
Re: Kyprolis (carfilzomib) and hallucinations?
Hello Amanda, I have taken all of those meds and never had hallucinations. I am not a doctor, but I would think the oxycontin has something to do with it. I take hydromorphone for pain and it is better than oxycontin. Maybe she could change to it and see if that helps. 
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Kyprolis (carfilzomib) and hallucinations?
Hi Salamandah,
My very first 40mg of dex gave me the most amazing/terrifying hallucinations. I was on 40 mg for 4 days. After that the hallucinations didn't occur all the time and eventually I didn't get any when I was only on 40mg for one day/week. I asked the oncologist about it and he said "Oh yes hallucinations are common especially in dex naïve patients.". Your mum may be experiencing a double whammy having both dex and oxycontin.
Hope you sort out the problem, all the best for you and your mum,
Libby
My very first 40mg of dex gave me the most amazing/terrifying hallucinations. I was on 40 mg for 4 days. After that the hallucinations didn't occur all the time and eventually I didn't get any when I was only on 40mg for one day/week. I asked the oncologist about it and he said "Oh yes hallucinations are common especially in dex naïve patients.". Your mum may be experiencing a double whammy having both dex and oxycontin.
Hope you sort out the problem, all the best for you and your mum,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
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