My husband has ongoing difficulty staying asleep at night. He saw a sleep doctor, went through a couple of sleep studies, and was diagnosed with severe obstructive and central apnea, with 68 incidents per hour. We thought the bipap machine would solve everything, but it hasn't. It did solve the apnea incidents, but he still wakes up about every 1-3 hours all night.
Even though Darzalex is keeping the myeloma somewhat controlled, he has some fatigue anyway, but getting up all the time at night is wearing him out (me, too, to some extent).
He is not taking dex except a little monthly with his infusion, so I don't think that is a factor. We have tried various herbs, Benadryl (diphenhydramine), magnesium, melatonin, prescription sleeping pills, muscle relaxants (theory: leg cramps) , Neurontin (gabapentin) (theory: restless leg), and antidepressants that I can think of. Everything works once or twice, then quits. We hoped getting off pain medications would help, but it didn't.
I have read in some research that this is common with cancer, but they didn't offer any solutions. Does anyone have any more information or experience with this, including what can be done about it?
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vmeyer - Name: vmeyer
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 65
Re: Can multiple myeloma affect sleep?
I have not heard that Darzalex had insomnia as a side effect. Dexamethasone is the usual culprit, but his usage is not frequent. So it looks like the current treatments are not the culprit. It is possible that the cumulative effect of treatments over time are causing the issue. The body may be reacting to that cumulative effect. I certainly would discuss this with his oncologist.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Can multiple myeloma affect sleep?
We did talk to his oncologist. That resulted in several prescriptions that didn't work and the referral to the sleep doctor. His oncologist doesn't think it's medication-related either, since he's on almost no medications and only has Darzalex once a month. When it began, he was on far more drugs, but he's left them behind. He does still have active myeloma as far as we know; his M-spike is 0.6 g/dL.
Two studies I read correlated sleep difficulties in cancer patients to fatigue levels. One of those was specifically done on myeloma patients. They offered no remedies, though.
I was finally able to access his records from his bipap machine. He averages waking 5 times in a 5-8-hour usage period. We do have an appointment with the "head honcho" sleep doctor in town next week. It will be interesting to get his take on that. I am hoping somebody here can weigh in with something with potential solutions, or even thoughts such as you shared!
Two studies I read correlated sleep difficulties in cancer patients to fatigue levels. One of those was specifically done on myeloma patients. They offered no remedies, though.
I was finally able to access his records from his bipap machine. He averages waking 5 times in a 5-8-hour usage period. We do have an appointment with the "head honcho" sleep doctor in town next week. It will be interesting to get his take on that. I am hoping somebody here can weigh in with something with potential solutions, or even thoughts such as you shared!
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vmeyer - Name: vmeyer
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 65
Re: Can multiple myeloma affect sleep?
His M-spike is not very high. Sounds like he is on a maintenance dosage of Darzalex. Will be interesting to here what the sleep specialist says.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Can multiple myeloma affect sleep?
I had terrible sleep problems that no doctor could figure out. Finally I was even sent to a psychiatrist and then to a psychologist, and they came up with unhelpful psychological interpretations. By accident, I found an excellent sleep doctor who diagnosed it immediately: restless leg syndrome, also known as Willis-Ekbom disease. It is caused by too great a drop in dopamine as night-time approaches. A very small dose, taken in the late evening, of a dopamine agonist (as opposed to an "antagonist"), pramipexole (Mirapex), completely and instantly solved the problem. It was amazing!
I should add that the name "restless leg syndrome", is a misnomer, at least in my case. I never suffered from a feeling of restlessness in my legs, and perhaps that was why other doctors could not diagnose it. For me, it was a general agitation and muscular tension that increased as night-time approached, such that I was not able to relax my body enough to sleep. I actually could get some sleep during the daylight hours, maybe an hour or two here and there. Dopamine production increases during the day.
Unlike Parkinson's disease, which also is dopamine related, my condition does not cause deterioration of the dopamine-producing cells in the brain.
I have no idea if this problem applies to your situation, but I thought I would mention it, just in case.
I should add that the name "restless leg syndrome", is a misnomer, at least in my case. I never suffered from a feeling of restlessness in my legs, and perhaps that was why other doctors could not diagnose it. For me, it was a general agitation and muscular tension that increased as night-time approached, such that I was not able to relax my body enough to sleep. I actually could get some sleep during the daylight hours, maybe an hour or two here and there. Dopamine production increases during the day.
Unlike Parkinson's disease, which also is dopamine related, my condition does not cause deterioration of the dopamine-producing cells in the brain.
I have no idea if this problem applies to your situation, but I thought I would mention it, just in case.
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bodumene - Name: bodumene
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January, 2017
Re: Can multiple myeloma affect sleep?
Interesting. I will mention it when I go with him to the sleep doctor Wednesday.
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vmeyer - Name: vmeyer
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 65
Re: Can multiple myeloma affect sleep?
My husband gets terrible leg cramps, even though he is only on dexamethasone, and often wakes up due to this. He found taking a supplement that runners / bikers take for cramps that is electrolytes really helps. Before this, he was drinking gallons of Gatorade. These pills have no sugar and are more effective. Since taking them, he doesn't get leg cramps at night anymore.
Re: Can multiple myeloma affect sleep?
Marett,
Interesting post on the electrolyte supplement. I am an avid cyclist and also experience leg cramps at night. In many cases, it can be exacerbated by dehydration. When on dex, I would suggest drinking more water. I also take a product called "sportslegs" that has additional calcium, magnesium, vitamin D, and lactate. It helps me, but my cramps are related to lactic acid building up due to exertion.
Interesting post on the electrolyte supplement. I am an avid cyclist and also experience leg cramps at night. In many cases, it can be exacerbated by dehydration. When on dex, I would suggest drinking more water. I also take a product called "sportslegs" that has additional calcium, magnesium, vitamin D, and lactate. It helps me, but my cramps are related to lactic acid building up due to exertion.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
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