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Hi All,

I am sitting here tired as can be because of another long night of restless sleep. I am 2 weeks out of my 2 chemo treatment and doing much better than week 1. I had the Neulasta shot which did WONDERS for me. It made a huge difference in the way I felt and how my body reacted to these crazy drugs. I had minimal tummy issues and body aches but all manageable. My only issue now is the restless sleep. I can't seem to get more than 2 hrs straight without waking up. I am not waking up in pain or for any particular reason I just wake up. I wake up anywhere from every hour to every 2 hours. So I am exhausted all day. I haven't talked to my Onc yet which I plan on doing so but wanted to see if anyone out there has had this experience. I really don't want to have to take any more meds as I am very sensitive to meds that are supposed to make me drowsy. I have little ones in the house and want to be able to respond if something happens through out the night. Drowsy meds knock me out. Any suggestions is greatly appreciated.

Thank you all in advance for all your help!

Re: Can't sleep!

Hi LMB. Glad your 2nd chemo went better but I hear you about the sleep issue. It was the same for me -- suddenly wide awake, in a way totally different from the drowsy slightly-awake, roll-over-and-back-to-sleep "usual" awakenings. I think it was a mix of hormone changes (often hot flashes followed the awakening) and frantic brain. Like you, I do poorly with anything sedating -- it lingers into the next day and I hate feeling so slow, so I didn't use any meds to help with sleep.

Are you prescribed steroids (decadron, usually) around the time of chemo? They can interfere with sleep. If they are playing a part, and you've had no trouble with allergic reactions so far -- you might be able to negotiate a trial of a lower dose of them.

What has worked really well with the middle-of-the-night awakenings for me has been putting books on tape on my iPod and listening to stories via earbuds, when I find myself awake and not getting back to sleep. I wish that I'd had this "treatment" during chemo. It works well for me for several reasons. I don't get so anxious about not-sleeping, telling myself that at least I'm relaxing and enjoying myself, as I listen to my stories. It diverts my mind from those crazy anxiety-filled chains of thought that can happen at 3am. I often fall easily back to sleep, while listening, and then the next time I awaken, I go back to listening. I've found that interesting but fairly light books are best -- no depressing ones, no REALLY tense or intriguing ones. Simple British mysteries work well for me. Even ones I've already read or heard.

Talking about this reminds me of those long nights, and of something I noticed during chemo. I'd already been perimenopausal so hot flashes weren't new to me but the intensity and frequency of them were, and it began within weeks of starting chemo. The odd thing, though, was that I'd wake up, suddenly, wide awake (as LMBs notes). As long as I just lay there, nothing happened. But the second that I turned over (moved, I guess) -- bam, a major hot flash would happen. Did anyone else experience this? So the awakening preceded the hot flash, but still seemed related to it. Or was it? It was hard to figure out the physiology behind it.

Debbie L.

Re: Can't sleep!

Hi Debbie,

Thank you for sharing your story it is EXACTLY how I feel! Glad to hear I am not going crazy. :-) I am 33 years old so hot flashes are completely new to me but I am sure aware of them now. I wake up suddenly, wide awake, and almost always have a hot flash. For a while I would take my temp thinking my temp was up or something but it was always fine. I finally realized what was happening.

I will certainly try the books as I just find myself lying there thinking I need to sleep but the more I think the more awake I feel. I do my best to get a nap in during the day to help with the lack of sleep but am hoping I can get this night sleep under control.

I will also talk to my Onc about the steroids to see if that helps any. Would really just like to sleep more than 2hrs in a row.

Thank you for your help!

Re: Can't sleep!

LMB

In the 1980s I filled a lot of prescriptions for a drug called Dalmane for sleep. I think the generic name for Dalmane is Flurazepam. One of the reasons that doctors stopped prescribing it was that it was too long lasting and seemed to cause morning hangover. It may help you since duration of sleep is the problem. It is a benzodizepine drug related to Xanax, Ativan, Valium etc.
Talk with your phyhsician

Paul

Re: Can't sleep!

I had the same problem during chemo and it was from the steroids as Debbie says, I still don't sleep well so think the suggestion of listening to books on an ipod is a good one and will try that myself. My friend told me Melatonin sometimes helps but you need to ask your Onc about that before trying it. I used to just nap as often as I could though the day and get online when awake through the night, not ideal but it should improve once you're finished, I think in my case Arimidex is the culprit!

Re: Can't sleep!

You are not alone. Sleeplessness seems par for the course with Chemo. I would take several Ativan and live with the morning hangover. It didn't last very long once I got up and moving around.

Re: Can't sleep!

I recall that once I hit menopause my sleep patterns got totally out of kilter. Like you, I would just BE awake! And our bodies have been put into a menopausal state now with all the hormones being suppressed I tried different sleep medications and disliked the effects. But I discovered that one Ativan tablet relaxes my mind enough to allow for sleep. I find I can still wake during the night if needed and I don't have a morning hangover. It's not really a sleeping pill but anti-anxiety that provides just enough drowsiness
Hope this might help
Keep the faith

Re: Can't sleep!

Boy, do I relate to this one. I have had chronic sleep problems since adolescence and have grown used to functioning with little sleep.

Unfortunately, I am severely lactose intolerant and all sleeping tablets contain lactose. I have used them intermittently at low dose with lacteeze (lactase enzyme - I don't find lactase very effective by the way.)

Firstly - Google "sleep hygiene" and get your sleeping conditions set up as best you can for your situation. Reduce as any other side effects you might have like pain and oesophageal reflux at bed time that you can. Everyone has a "sleep wave" that comes over them and that is the best time to get to sleep. Very hard with small children! Set up the best sleeping conditions for them too. Try to get your husband/ partner if you have one to get up to the kids at night if possible, or at least try to get him to get them to sleep so you can have a mental wind down period. Eventually and reluctantly, I had to move into a separate air conditioned quiet room from my husband to sleep, because of his snoring (or even just deep breathing). Oh and did I mention, coal trains come squealing down the range every 60 to 90 minutes near our house all night. I am the only one in our house who notices them.

There are some herbal medication and teas with valerian, chamomile etc that can help, but many people on chemo have to resort to medication just to survive. Depression and dysfunction due to lack of sleep is probably worse for your family than a bit of a morning hangover. Which might be due to the chemo itself anyway.

Rests during the day will help you cope. If there is someone to take care of the kids for an hour while you rest, take advantage of it. Do not do house work during this time!!! Meditation and learning to calm your mind is very helpful too. (Also knowing that dying from lack of sleep is very rare unless you are addicted to drugs like dexamphetamine was a comfort to me!)

I have only used the lightest shortest acting benzodiazepine (I will use the actual drug name and you can look up the brands in the USA) - temazepam. I don't really get a hangover with this if I take it before midnight. Deciding to take it and taking it early is better than when you are worked up and desperate in the middle of the night. In general, I never take it on consecutive nights. That was before chemo craziness though.

Other drugs commonly used for chemo are Lorazepam (Ativan) and Zolpidem (Stilnox). The last is some people's savior, but has some strange side effects on a minority. Your primary care physician is the best person to help you here.

I have had an average of 2 hours sleep a night for over a month, so I am finally giving into my oncologist's insistence that I use more medication despite my bowel problems (I had my 5th infusion of TCH yesterday). I am allowed to try the liquid oxycodone which I was given for severe rectal problems in my first round, but have never used since. Taking that is like taking a triple whisky. I'm only going to use that as a last resort and it would be a poor option for you.

One of my main problems is the hot and cold flushes. I think this is partly due directly to the chemo drugs, but chemo induced menopause has probably now set in. My oncologist says I can try vaginal estrogen cream to see if it helps. I am ER, PR negative. She wouldn't prescribe it for an ER+ breast cancer patient who usually have anti-estrogen therapy to block it anyway. However there is no good evidence that a small amount of vaginal estrogen increases blood levels of estrogen above the normal menopausal range. There is a good dose of paranoia out there about this and the drug companies don't recommend its use in breast cancer patients. This is not evidence based and I would not be worried if you are ER neg. I am getting my cream this week and will tell you if it helps me. Almost all hormonal tablets have lactose in them and I am allergic to the adhesives in patches, but vaginal cream is a good low dose way of getting a little estrogen on board. It is the most effective treatment for menopausal symptoms with the fewest side effects.

SO - I hope that helps a little. Learning about sleep hygiene, day time rests, meditation, herbal help and a short acting benzodiazepine might be the best chances for you.

Good luck, dear LMB3. I would hate to tell you how little I slept when my kids were small and how long it took me to realize that I needed to look after myself before I could look after them properly.

Aussie Girl

Re: Can't sleep!

Temazepam is Restoril. I forgot all about that one. In fact I think it was created because Dalmane caused too much morning drowsiness. The half life of Restoril is about 8 to 10 hours. Dalmane, itself, has a short half life but an active metabolite of Dalmane is formed within a few days that has a half life of 75 to 100 hours. Restoril (Temazepam) is probably a better choice to start with.

Paul

Re: Can't sleep!

I take 3mg of melatonin. It is produced by the pinneal gland, but production declines as we age. If you are still unable to sleep then I would take 6mg or even 9mg. You can do a search on melatonin and breast cancer, and you will see a lot of positive articles on it. If you wake up feeling drowsy the next day, then cut back on your dosage. It works for me and is a good anti-oxidant. Good luck.

Re: Can't sleep!

My doctor gave me Ativan...the generic is lorazepam. It not only helps with sleep, it helps some with nausea as well I was told. It took care of my sleep issues, and I think is pretty commonly prescribed to chemo patients. You might check into it. I sure hope things get better. Big hugs and lots of prayers from me to you.

Re: Can't sleep!

You might ask your doc about clonazepam.

Re: Can't sleep!

I used Ativan and keep a prescription now for nights when I can't sleep. It has never left me feeling hung over, but I would recommend taking it earlier than waiting for the 3:00 am wake up if you have to be up early. I would typically wait to take it after have a couple of sleepless nights, then take it at bedtime the third night to ensure one good night's sleep.

These days I usually only need it on the occasionally Sunday night, when my brain starts gearing up for Monday morning before I get there!

Best of luck to you for a solution.

Re: Can't sleep!

Thank you all for your help on this. I will certainly talk to my doctor about the options you all have given me. My youngest is 3 and although he sleeps through the night there are the occasional bad dreams that I want to respond to. My husband has a CRAZY work schedule so some nights its just me and the kiddos. I also have gone back to my full time job so my daily naps are now limited. I do manage to get a lunch time nap as I don't live far from my job. I haven't felt to bad yet but know this is going to catch up to me soon and I can't imagine it being very healthy for me. So at this point I am willing to try what ever I need to in order to stay healthy and strong to fight this fight.

Thank you all again!