sleep

[juanita]

How many of you have trouble falling asleep regularly? How often is that? How soon after diagnosis did you start having problems? Do you take anything for it? How often do you take it? How long have you been taking it?

[hutchibk]

I have had the benefit of Lunesta for the last year. Herceptin and Taxol seemed to create regular sleeplessness for me and the sleep deficiency was becoming unbearable. I only take it every once in a while, and never more than 2 nights in a row, but it was a god send and a sanity saver. I get the best sleep ever when I take one, and I awake 8-9 hours later TOTALLY refreshed with no hangover. I take the lowest dosage possible. It helps me fall asleep (usually 15-20 min after taking) and helps me stay asleep.

[Sheila]

Juanita
Like Brenda, The Taxol Herceptin Avastin regime has really played havoc with my sleep...if I do fall asleep, I wake up 1 -2 hours later and can't go back to sleep...it is awful. I have been using Advil PM with Benedryl in it, but its not working too well anymore....
Sleepless in Illinois

[fauxgypsy]

I have had trouble for years with sleep. I have fibromyalgia in addition to everything else. Prior to my cancer diagnosis I was taking Restoril. It works for me most of the time without any draggy side effects. Still, I am sleeping much better now that I am just getting Herceptin and Femara.

Leslie

[PinkGirl]

Hi Juanita
I had lots of problems sleeping (anxiety) when first diagnosed. I used Ativan then, and had a good sleep, but had the Ativan hangover the next day. During chemo I didn't use anything because each day was different for me - I wouldn't sleep well for a few days and then I would be so tired I would sleep for 2 days. Now I am okay because I have a "general" fatigue all the time and I fall asleep easily. At one time I also used Amitriptline (25 mg.) and it worked great after I adjusted to taking it. The first week or so I was a zombie during the day. Now, if I need something the odd time, I use Ativan.

[Brenda_D]

I went thru a period of sleeping in fits and starts after dx. My GP put me on Prozac and it helped for awhile.
Now I'm having trouble going to sleep. Laying awake until after midnight or more. Once I'm asleep, I sleep good.
I'm going to have try something to get to sleep faster.

I'm currently on Herceptin only. I wasn't aware it affected sleep.

[Emelie]

I have used Ambien CR and regular Ambien with great results. They both have helped me get some sleep. Herceptin alone has caused me to lose a lot of sleep. I usually only need it one or two nights a week. Ask you doctor for something that you can use when you really need a good nights sleep.
Good luck with the Z's,
Emelie

[LAURIE]

Lunesta did help me a lot during Taxol. I don't take it too often now, but do occasionally to help me fall asleep. The only reason I cannot fall asleep these days is because I am thinking about work or if I know I have to get up early. I take the higher dose 3mg. Usually about once a wee or less. I have not had any bad side effects at all.

[MJo]

My sleep patterns didn't return to normal until I stopped Herceptin. I used Xanax to cope. Sleep deprivation is a very real side effect of all the treatment.

[KRISS]

I have no problem falling asleep it is staying asleep that kills me. I started taking Ambien CR a couple nights a week and it seems to give me the best results.

[dorinda]

i work nites so my sleep patterns are all messed up. after my chemo i am wired for about 2 days and cannot sleep due to decadron and then after that i am kinda fatigued. when i have trouble sleeping i take a tylenol pm. i have wanted to ask for something but never have.

[weezie1053]

Never took a sleeping pill in my life...until chemo. I was wired while on AC/Cytoxin and Taxol. Onc prescribed Ambien, and it made a world of difference in the quality of my life. I worked through most of my chemo, and I needed whatever rest I could muster. Now, I occasionally break one in half. This website keeps me awake at night. http://her2support.org/vbulletin/images/icons/icon11.gif I feel like I need to check in every couple of days so I don't miss something. Went to my second support group meeting tonight, and I told my husband, I just feel like I have learned so much from the website vs. what those gals at the support group are sharing.

[BonnieR]

I suddenly had problems sleeping when I went off my HRT last year. Hot flashes, night sweats etc.. So I was taking one half of an Ambien. Then, when I got my diagnosis it got worse. My brain goes into overdrive as soon as I hit the pillow. So I listen to relaxation CDs at bedtime. But I also am now take Ambien CR every night prescribed by onc. I don't much care if I get dependent on it. I am also dependent on sleep.

[Lolly]

I started having trouble falling asleep after starting Herceptin, but that was also when I was diagnosed with recurrent bc, stage 4, so I attributed it to anxiety. My PCP recommended a SSRI, which I still take(currently Celexa), and Tylenol PM. I switched to generic benedryl, and take 1/2 a pill nightly (12.5mg) along with 2 mg. Melatonin, about an hour before I go to bed.Usually I can get to sleep now within 15 minutes, unless I've forgotten to take my meds and then I have trouble again, but I don't know if it's anxiety from the bc or anxiety because I've forgotten my meds and am afraid I won't sleep!

<3 Lolly

[SusanC]

I have had trouble sleeping for years (4-5 years). Prior to dx I was taking ambien. It would really help. The trouble was/is staying asleep. I often fall asleep and then wake up just minutes later with my heart beating fast. I usually read or computer solitare to fall asleep. I am getting good at solitare!
Susan C

[Ruth]

I take a Lunesta if I need it and it works fine for me. I used to take Ambien during treatment and had one of those crazy sleep walking episodes so I stopped them. I woke up one morning and saw that a whole giant bag of cheese puffs was empty. I blamed my two oldest boys of raiding the pantry in the night and they told me they were innocent and I was the one who had crumbs all over my pj's and face! I had absolutely no memory of eating them and I had never done anything like that before.
Freaked me out!
I think it is completely normal to go through this especially reading all of the responses noted here. Since it has been a while since I stopped treatment, I have much less need for help but I like having it available if I need it.
Peace and pleasant dreams! Ruth

[GemmaG]

I don't post much but i read all the post almost every day. Ruth, I have the same thing with Ambien. I sleep walk! not eating though. Sleep talking on the phone?! I don't know. I don't know how to describe it. One time, I even text message my friend and don't remember it the next day. I just saw her reply to me. I still take it as needed but I'll make sure no phone or any gadget next to me :-)

Hugs,
Gemma

[BonnieR]

Susan C, I was having trouble staying asleep with the plain Ambien too. But Ambien CR made all the difference.
Ruth, I know sleep walking/eating is a scary business but I must say you painted a humorous picture!!! Your boys must have enjoyed "busting" you!

[Sheila]

OK, Now I'm worried...I finally asked the Dr for something for sleep today...real medicine I told her...I didn't sleep at all last night before going today, and today was my Decadron IV push day...so she ordered Ambien 10mg....if it doesn't help, I will ask for the Ambien CR......I just know I need to lock the kitchen cuboards so the fritos and cheetos are safe at night!

[Karen Weixel]

I never had a problem sleeping until right after I completed AC & T and had just started Herceptin. After 2 months of not sleeping, my onc prescribed Lunesta. It really helps.

Karen

[Bev]

Hi,

I did Ambien the night before the 4 ACs. Anxiety. They said if 1 doesn't work after 15 minutes, take another. It worked.

2years out, there are times when my mind whirs, but after 2 days I'm too tired to stay awake.

I never felt the need to stay on it, so I wouldn't worry about dependence. I didn't have crumbs in my bed either.
So do something. If the first drug doesn't work, try another. You do need your sleep. BB

[BonnieR]

The only problem that might arise from taking a second pill at night, it you take the sleeper regularly, is that the prescription might run out. And they can be sticklers about renewing it. So it would be better to get the "CR" formula which provides better sleep coverage. At least for me.

[juanita]

I am not doing any treatments right now, ended my year of herceptin a year ago. My old pcp who gave me ambien while I was still doing treatments thought it was probably hormonal changes because it started after chemopause. I've had to be off of it for about 6 months, so I know it's not withdrawls. I have actually had just 1-2 hours of sleep and not really felt too bad the next day. And even the next night it is still hard to get to sleep. When I knew i was going to lose my perscription to it I saved some of what I have for EMERGENCIES! I have a new pcp and when I go back I'll talk to him.

[Margerie]

I starting having incredibly bad insomnia when I started Taxol/herceptin. Not a wink of sleep all night- it was awful. It remained consistent when I went on just Herceptin. I tried a few of the sleeping pills- yucky side effects. Started taking melatonin, GABA and benadryl. Works well 9 nights out of ten. Once I tackled the insomnia- my afternoon fatigue has gone away.

[doh2pa]

While I was on TCH I took Ambien for 6 months straight. I was worried about dependency but desperately needed sleep. After 3 months, I started to sleep less with it so switched to Ambien CR. When I was done with my treatment I gradually got off it. It took about 2 weeks as I cycled down but was well worth the 6 months of sleep I got from it. Don't be afraid to take something and there are lots pf options out there so if one doesn't work, try something else. Sleep is key for your body to regenerate and for your immune system to keep up the fight. Good luck!

[SoCalGal]

Interesting that none of us sleep very well. For me, I've never been a "good sleeper". Night owl, hard time falling asleep. Since chemo I've used Ativan at night. Sometimes it works, sometimes not.

According to my integrative oncology MD at UCLA, woman with cancer lack MELATONIN. He'd like to see me on 21 mg a night and states that dose has been proven to "put cancer cells to sleep". That's 7 pills a night at 3 mg each. He also states that studies have shown that woman who work nights have a higher rate of cancer. I have not challenged him or researched his statements, but it's interesting to see the sudden exchange on sleep.

The drawback to melatonin is vivid dreams which are supposed to stop after a couple of weeks.

Ironically, I cannot tolerate melatonin - oh well - I do make an effort to sleep every night now!

Could being a poor sleeper be another contributing factor?
Flori

[SoCalGal]

Just want to clarify that one thing:)

[tousled1]

Since being diagnosed I've had terrible sleep problems. My primary care physican presribed Ambien for me -- didn't work. I now take Ambien CR and I also have rozerm to take. If I wake up after only an hour or 2 then I take the Rozeram.

[AlaskaAngel]

Flori,

I posted a professional review about the current info on melantonin in the articles section if you want to get more of an idea of what your onc was talking about. There seems to be some more recent serious interest in the use of melatonin for cancer, and the article does a pretty good job of explaining it.

The thing I have always liked about melatonin at a low dose is that I feel clear-headed and relaxed and fresh the next day. I have never tried taking more than 1 or 2 mg a night, and possibly to get the hoped-for anti-cancer results it might require a higher dose. Right now I'm taking just 0.25 mg. (It is hard to break them little buggers into quarters, though!)

AlaskaAngel

[PinkGirl]

Hi all,
Maybe that's why I gained so much weight. I must have been eating in my sleep!!!

[MCS]

Dear ladies,

I've always had a sleeping problem. Even before dx. My father and his mother and his sister did too. I guess runs in genes.
Anyway, with all the anx over this illness, treatment etc, the sleepness got worse.

So I'm on ambien. 5mg or half a pill every night. I really can't sleep without it. the onc syas when are you going to get off this and I don't know how to answer. i also need the ativan every once in awhile to deal with stuff. IN my next visit with onc I'll aks if he can just keep renewing the ambien because my gp is stingy tight with meds, I literally have to beg for anything.

I have not had any sleep walking or anything with the ambien. But let me tell you ,my hubby sleeps like a rock, even through earthquakes so if I slept walked, he would not know :)

Sweet dreams

Maria ( mcs)