Herceptin-related sleep problems

Christine MH-UK · 01-06-2006, 03:42 AM

Hello everybody,

So far I have had three and 1/2 months of herceptin and the only problem I have had is sleeplessness that worsens with every round. The sleepless is definitely caused by the herceptin because I am on no other medication. At first it was just a minor problem, but now it is really getting to me. It takes a long time for me to sleep at night and I wake up in the middle of the night and have trouble getting back to sleep, too. I will be talking to my oncologist about this, but I just wondered how other people have coped with this problem.

On a more cheerful note, I have one less thing to lose sleep over: the British National Health Service has agreed to provide the rest of the year of my herceptin, which is a major relief.

All the best,

Christine

cdbrown428 · 01-06-2006, 07:52 AM

I too have sleep problems. Chemo put me into menopause, so I have to deal with the hot flashes at night. But I also have problems with muscle aches and joint aches and I went off chemo in July so I know it is not from that. Tylenol sometimes helps at night with this but I feel flu-like all the time and some days worse than others. I have been on herceptin for 6 months and another 6 to go. I have weekly infusions. Do you have any problems like this? My oncologist give me no answers as to why I feel like this but my only explanation is the herceptin.

cdbrown428 · 01-06-2006, 08:17 AM

I too have sleep problems.

mts · 01-06-2006, 08:33 AM

I'm also taking Herceptin. I take Ambien to sleep. It does not "knock me out". I still wake if I hear my little ones going potty or if they call out for me. I then return to bed and fall back to sleep! Hot flashes do not wake me up. I know this drug is addictive, but I must say, it does not affect in any way my wakeful hours. I have gone off on weekends w/my husband and I noticed I don't need the Ambien then... I surely feel that stress contributes to my lack of sleep. But in the end, I am glad Ambien exists.

I also take Effexor (37.5mg) every morning for hotflashes. I, like so many of us- am in "chemopause" and the hot flashes were horrible. With the Effexor, I have not had a hot-flash for months!! Effexor is actually a psychotropic drug given for Depression. It's "side-effect" is lessening hot flashes. Surprisingly, one of my oncs did not prescribe Effexor to his patients (but now he does!). I just take a 1/2 dose. One thing about Effexor is that if I miss a day, I get a light headed feeling. So I am never out of that drug. My side effect is that my kids are more tolerable now...

Before I got cancer, I wouldn't even take an aspirin. I hated to put any kind of drug in my body. My, things have changed...!!!

I know many of the women on this site have tons of homeopathic remedies and excellent suggestions for helping overcome sleep problems. Before Ambien, I tried bubble baths, babysitters, visualization (you name it). Everyone told me to start an excersise regimen. Well- it did not work either. I still work out, I also do yoga and nothing works like Ambien!

Sleeping soundly,

Maria

Christine MH-UK · 01-06-2006, 09:08 AM

According to good old Medline, sleeplessness is a known possible side effect of herceptin.

http://www.nlm.nih.gov/medlineplus/d...r/a699019.html

I am semi-menopausal (seem to get a period about every few months) and the sleeplessness seems to be worse right after I get my herceptin and used to let up towards the end of the three-week period (not any more though). Although I have some stress, the sleeplessness doesn't seem to let up when the stress decreases.

Marlys · 01-06-2006, 10:12 AM

Christine, I have all the achyness but no problem sleeping. The pharmacist at my treatment center says it is from the Arimidex.
Are you one it?
Marlys

Julie2 · 01-06-2006, 10:17 AM

I too have sleeplessness. If get up in the middle of the night it is very difficult to go back to sleep. I thought it is due to the CoQ10 I am taking and trying to cut down on it in the night.

Julie

dskdrive · 01-06-2006, 05:33 PM

I was put on Arimidex in Apr 05 and that was when the sleeplessness began. I started Herceptin in Sept 05 I would be still be sleepless if it was not for Ambien. I tried melatonin, valarian root, Tylenol PM, but nothing else works. I work 40+ hours per week. I have to sleep!!!

sassy · 01-06-2006, 08:49 PM

I'm on herceptin, arimidex and fosamex which all cause joint/muscle acheyness. Been taking ambien more since starting arimidex. Working full time with two kids. Never would take anything for sleep before bc, but feel now the sleep is more important!

Sassy
________
Sunset Boulevard Residence

01-07-2006, 02:55 PM

cd brown
My sister said the Femara/letrasole may be causing your muscle aches and pains if you are on this. She says she feels like she is 100 yrs old if she sits still for more than 15 or 20 mins. Goes away after 10 mins of moving.
kk

AlaskaAngel · 01-07-2006, 04:39 PM

Glad to hear you are getting help with the cost of Herceptin, Christine MH-UK!!

Regarding sleep problems... some get caught in the cycle of needing caffeine to kick in to get going when the day starts, but then unable to sleep at the end of the day... Giving it up entirely is hard to do when you are used to that nice hot java, but try it... For something hot in the morning try soy milk... It did take a while for me to get used to the taste. I use unsweetened and then put stevia in it along with baking cocoa and/or some turmeric.

Also I too found initially that melatonin didn't work for sleep--but after taking it every single night for a while it eventually worked for me and now works very well if I take 1 mg about 3/4 of an hour before bedtime.

julierene · 01-07-2006, 04:58 PM

I am so GLAD I read this post. I have been struggling with sleep problems ever since I started this treatment, and I thought it was just stress. Now that I think about it, my week off was this week, and I have been sleeping better.

01-08-2006, 06:54 AM

I have a terrible time sleeping too. Finished chemo in May and have been on Herceptin since then. I have been on Ambien since surgery last Jan. I see onc on Weds and I think she is going to cut me off of the Ambien. I am dreading it. Last time I saw her I begged for it thru Christmas.

Everytime I try to sleep without it I get so stressed out. I also get up ALOT at nite.

Ugh!

Olivia

cdbrown428 · 01-08-2006, 10:41 AM

Thanks for responding. The only thing I am on is the herceptin. I also have sleep apnea so I cannot take any type of sleep aid.

AlaskaAngel · 01-08-2006, 11:17 AM

Are you on CPAP or similar treatments for that, CDbrown 248?

A.A.

cdbrown428 · 01-09-2006, 07:10 AM

No I am not. I am only on the herceptin. I can't take any sleep aids because of sleep apnea. I just can't figure out why I have been feeling this achiness, even when trying to sleep at night. You would think you would feel better at night when resting. I'm beginning to feel like I'm on chemo again except for not being tired. The least little thing wakes me up at night. I've been on the herceptin for the past 6 months and 6 months to go. My treatment is every week. It seems, though, that every one of us is having sleep problems, one way or the other, no matter what variation we are on. Tomorrow is one year for me since I started treatment (1st chemo) so since it's been a year now, I can only "dream" about having a normal night's sleep. Oh well, I am thankful I am alive! This is just part of the course. It could be worse. I am new to this site but I have learned so much already. It has been very helpful and responses to me have been wonderful and very much appreciated. You are all in my prayers.

Cathy

Christine MH-UK · 01-09-2006, 09:49 AM

Well, for some reason my sleeplessness has let up a bit and I slept o.k. over the weekend, although my toddler has started waking up at about 5:00 for some reason.

It is definitely the herceptin causing the sleeplessness in my case, since I am not on anything else. I'll definitely check out the melatonin or ambien if necessary, though.

Patty H · 01-10-2006, 08:41 AM

I also take ambiem. My Drs. think it is important to get you sleep for your body to heal. I don't take it every night, but I have a glass of water on my night stand and my ambiem, If I am still awake an hour after I go to bed, I take one. Patty H

karenann · 01-10-2006, 08:50 AM

I am having a horrible time sleeping, too. It started shortly after my last taxol and the beginning of Herceptin. I am now on, Lunesta until the end of Herceptin. My onc feels it is important for me to get my sleep right now, so my body heals.

Karen

01-10-2006, 09:49 AM

Hi everyone,

Sounds like it is the Herceptin. My wife has been having the same problem. She also does not want to take any sleep aides, but in the end she does. She takes ambien. I think it works great and she is not sleepy in the morning. She now takes it 3-4 days after the injection for 3-4 days. It has improved here quality of life( and mine too!)

John