Bottle o Tamoxifen
Comments
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Lacey, I've been taking Ambien for about five years, ie including before BC. I love it and often call it my best friend. I had lifelong sleep problems, mainly an inability to fall asleep. As an adult I've developed a second cute trick where I fall asleep easily, but wake up after 10 minutes and then I can't fall back to sleep. In recent years I have also added the pattern where I wake up at around 3 and am unable to fall asleep again.
I never took sleeping pills because I was afraid I'd get addicted. I tried melatonin, Valerian, all kinds of sleep hygiene routines, read books about sleep, blah blah, but I was adamantly opposed to medication. Then I had a fight with my supervisor that I could tell was entirely because I was sleep-deprived, so I knew I had to do something.
Ambien really changed my life for the better. It totally solves the first two problems, with no morning grogginess. At first, I would cut a 5 mg pill in half. My mom takes 10 mg so she thought 2.5 mg was no better than a placebo, but it was a great solution for me. I go through phases where I take it every weeknight, or maybe Sunday through Tuesday nights, and other phases where I hardly take it at all, so 30 pills last me a long time. In the past year or so, I've gone up to a full pill every time, and even so I've started to wake up after 4 or 5 hours maybe 2/3 of the times I take it. That's the whole point of Ambien, that it's short-acting. Once or twice if I still have 3 hours of potential sleep, I've taken a half pill at 3 am, but then I do wake up still sort of dopey and I don't like to do it. So lately I've been using Zyrtec anyway for my weird rash (long story, could be Tamoxifen-related but if so it's quite a rare SE), and that usually helps me sleep; a couple of times, when it's been a couple of hours and I'm still not asleep, I'll take an Ambien on top of that, which my PCP said would be OK occasionally and with time in between--but ask yours if you are ever considering that combo. I also just got some controlled-release 2 mg melatonin (I had to get it online, but larger stores might have it), since 1 mg doesn't seem to do much, and took that last night for the first time. It was quite powerful and I don't know if I can use it on weeknights, when I often only have 6 hours available to sleep, but I'll try. As you can see, I'm a huge Ambien fan even if it does now sometimes fail on me in the middle of the night. To me it feels gentle and reliable, and it's not as habit-forming as sleeping pills in the past or as some other kinds, as I understand it. I've never felt as though I was afraid to try a night without it.0 -
ndgrrl - I was also postmenopausal when I started Tammi. Like others have said, the SEs will vary from one person to another. Hot flashes don't seem to be an issue with me. I had to have a hysterectomy this year due to uterine issues from Tammi and I don't even seem to have warm flushes anymore. You can always ask your MO about Effexor which many have taken for hot flashes - it also helps with sleep.
Lacey12 - My cancer was also 100% estrogen positive - was also 100% progestrone positive.. Guess my body produced a ton of it. It's good to hear that Ambien does help with your sleep issues. I have been plagued with sleep issues for a long time and I may ask my PCP about it when I see him next week. I have tried Melatonin and it does absolutely nothing for me. Can't figure that one out.0 -
Jo, fellow high estrogen sister, I have also not found melatonin to help me at all. But I have yet to try Ambien. RunFree seems to have it working for her....and many people I know who have gone through chemo with sleep issues, swear by it. I need to decide if it s worth taking another "potent" meds. The gabapentin kind of knocked me out, and I hated the feeling...also got my heart racing for some reason, which resulted in a cardiac eval. ...and a low dose of pravastatin. Oh the pharm possibilities that lurk!! Meanwhile I exercise A LOT and should be plenty able to get sleep...can GET TO SLEEP....just can't REMAIN asleep for whole night..tho I do not get up fretting and such...just have constantly interrupted sleep cycle. Seems like a small thing, but oh the effect on one's quality of life! I can't believe that this is not the reason one of te SEs of Tamox is "tiredness".
My MO is on a brief LOA...maybe I'll ask her to chat about Ambien possibilties when she returns.
Thanks for the input!0 -
Lacey12 - I was on Nortriptyline for 2 years and slept really well. I was diagnosed with permanent nerve damage from rads and was prescribed the medication. I found out it kept my pulse rate up and blood pressure was also starting to elevate. I have since weaned myself off of it. Before the Notrip, I took Lyrica which didn't do a darn thing so Gabapentin was not an option since they are in the same class of drugs. In the evenings, I feel exhausted and feel like I could sleep for days. I go to bed and am wide away for quite a while. When I do go to sleep, I am up every 2 hours. Grrr!!! So, it may very well be time to have the Ambien talk.0 -
Jo, just curious, have you tried controlled-release melatonin? In my limited experience--I used it for the second time last night--it's quite a bit more effective than the regular kind. I've also read that melatonin is slow-acting, so give it an hour or so of lead time. Ambien is quite beautifully fast, but if your problem is staying asleep at night, it might not be the right med for you. Still, could be worth a try. They do make controlled-release Ambien, called Ambien CR. Some people find it doesn't work, gives them vivid dreams, or (this was a while ago) causes them to sleep-eat, sleep-drive (!), and so on. But others seem to find it useful.0 -
RunFree - I was not aware that I could get controlled release Melatonin. That would be worth checking into. I have such a hard time getting to sleep and then staying asleep. It really is frustrating. I don't know how I make it through the day sometimes. Thanks for the tip.0 -
I've also found that melatonin's effectiveness varies from one bottle to the next, which is frustrating. My controlled-release ones are 2 mg. I think they were $6 plus shipping.0 -
RunFree -Where online do you get yours? I was assuming I could get it locally like at Walmart. Is that not the case? I don't have a problem ordering most anything online.0 -
Lacey, thanks so much for your support and advice. I was also 100% estrogen positive. I do need to exercise more. I did too much last year and injured my arms. Now I do Pilates and I need to get walking again - that used to be my favourite exercise.
Ladies, I take amitriptyline (20mg) to sleep and a Gabapentin (300mg). It usually helps.
I've been without tamoxifen for well over a week now, maybe even two (forgot to keep count). I have hugely increased energy and less depression. Haven't decided whether I will go back on it or not. I probably will because of recurrence fear but right now I'm trying to keep positive and keep doing the things in life that I love.0 -
Jo and others--I would have to dig harder to get you the exact place I bought my controlled-release melatonin from, but this link shows Amazon's offering of the exact product I bought:
http://www.amazon.com/Twinlab-Melatonin-Controlled-Release-Tabs/dp/B00024D4U2
I confess that on Sunday night, it didn't put me to sleep. I should have known, because I'm always extra jumpy on Sundays with the transition to the week. I went online and read that you can combine melatonin with Ambien if you reduce the dose, so I took 1/2 an Ambien and that was a winning combination--Ambien to put me to sleep, CR melatonin to keep me that way. Later I thought about how I read that on the Livestrong site, and I wondered, Should I be taking medication advice from Lance Armstrong? Anyway the other three times I've taken the CR melatonin, it has worked really well. I have woken up a couple of times, but I go right back to sleep. So welcome.0 -
RunFree - Thanks for the link. I have ordered a bunch of stuff on Amazon. I will order some and give it a try. Can't hurt.0 -
Sure Jo, hope it works for you!0 -
I've been on Tamoxifen for 5 weeks and so far my only SE is hair loss... but I am getting to the end of my patience with that! My pillow looks like a Persian can hat been sleeping on it, the floor is "carpeted", the plug hole in the shower is clogged... it really is coming out in handfuls. I know it's one of those slightly less common SEs that won't kill me, but I was wondering if anyone else had experience with it, and, most importantly, does it stop before all your hair falls out???0 -
Well mine got thinner, but not a lot! Maybe your SE is just worse than others? I know the gals will have more input here.... I was getting worried with MY hair loss.... but when I stopped taking Tamoxifen, it quit.....
Doesn't look like you had chemo either? But Tamoxifen is like a chemo drug... so maybe your hair loss will slow down a little.0 -
My hair has thinned a bit, but it didn't really start until about 4 months in (6 months in now) and seems to be slowing. Doesn't sound as bad as yours though - no handfuls, or noticeable amounts on the pillow. Just tons in the hairbrush and drain plug in the shower.
One thing I realized though, is that my hair used to be this thin, and had gotten really thick the last few years (I can tell by which pony tail clips I can use). I think my hormones had been out of whack and maybe my hair was responding to the estrogen dominance (I had other signs of that as well), and now it's back to "normal". I'm hoping it stays where it's at now though - this I can live with, but thinner than this and I might get upset.
I also had trouble with brittle nails, that started about a month in, but has pretty much gone away in the past month or so.0 -
Lahela, hair thinning was one of my most concerning SEs which was very noticeable to me and my shower drain. For some reason that has always been where my vanity lies. I found that that SE has remitted since I resumed my Tammy regimen after a three/ four week break last spring. Nails not so brittle as before either. Do you think trying Biotin might be useful? Have you discussed this with your MO?
I've also ordered the controlled release melatonin....with hope for some better sleep! Thanks for posting the link, RunFree.0 -
For you ladies with hair loss, try Biotin 5000mcg or 10,000mcg. I also had hair thinning/loss and on the advice of others here I started it. I noticed a difference after about a month. I have been on Tammi for almost 3 years and still take Biotin. I have to get my hair cut every 4 weeks and it is long then. My stylist fusses all the time - she has to take a lot off each time. Biotin is inexpensive and can be purchased anywhere Vitamins/Supplements are sold. Biotin also helps with nails!!!0 -
Anyone take effexor with tamoxifen to help with hot flashes and pain.0 -
My oncologists gave it to me, but I couldn't handle it. Felt very jittery and like I had bugs crawling on me. But I have heard a lot of women do take it.0 -
I take 75mg Effexor. Really helps w HF. Also helps me sleep. I had big time HFs about a month ago for a week or so. Then they magically adjusted and I am back to a few per days.0 -
Great Lacey, hope it helps!0 -
Re: Hair Loss I happened to get my first Rx for Tami the same day I had a hair cut and mentioned it to my cosmatologist. She told me about biotin for hair loss. That was 3 years ago 11/1. I always had thick hair but weak nails. Now my hair is thicker than ever (at 71) and my nails are stronger and have grown to a respectable length. Still have a problem--hair is extreemly fine so does not look that thick.
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Chabba - I also have fine hair. If you have your hair layer cut it makes it appear to be thicker. Only you and and your hairdresser will know the difference.0 -
I know. I was lucky enough even in high school to have someone who could layer it. No matter what the prevailing style I have always searched out someone who could adapt the technique to something resembling the norm -- but done my way. Every stylist I have ever had has commented on how much they enjoy working on my hair even if it can be a challenge because it is so thick, silky and baby fine. My hair is actually noiceably finer than the fur on a persian cat.0
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Hi all, I have a question about Tamo. Started it Sept 27th and noticeing some side effects. The dreams- wow vivid dreams that I remember. Not really totally nightmares but not good either. I lost both my sister and my mother to cancer and they were both in this last dream talking to me, though my sister didn't look quite right. Every night I have a vivid dream I am rememberering. Plus my ears are ringing- but not sure if that is from the Tamo or from me not sleeping well. I finally fell asleep about 4 am last night and did manage to sleep until about 10 am- so that wasnt too bad, the dream woke me up. I wasnt as hot- cold-hot-cold either last night- so I was hoping that was a good change. My ears ringing is a bit concerning.
I see the onchologist nurse practicioner on Oct 25, as they wanted me on the meds for a month before seeing me, I guess it must be to report any side effects., I am not sure, Do any of you go back for rechecks on it?
I have been noticing more hair falling out, not a ton yet and hope it stays that way, but I do go through shedding and my hubby hates it as I plug the drain. Doc put me on a new thyroid med last year and I didn't need my hair thinned for a year but my body adjusted to that and I hope it can adjust to this as well.
Ohhhh the not so fun things we do on this journey we all are linked in that we never wanted to go on.
Have a great day...0 -
Ndgrrl, I recommend one of those cheap screen-looking domes to put over your drain. We need it for my daughter's long hair. I scoop the hair off it after every shower. I'm not losing any more due to Tamoxifen though. My MO didn't want a check-up until three months after I started.0 -
Hi gals! NDGRRL.... Just be really careful! Ringing in the ears could mean more, but maybe not. Make sure you bring this up with your Oncologist.
I hate to post here, because of MY problems with Tamoxifen, but as long as you are aware that things are not "normal" maybe your "team" could figure it out.
I also had vivid dreams.... but most of my SE's went away, during that first year. I took Tamoxifen for 14 months.0 -
My MO wanted to see me after a month to ask about SE's, and then 6 months after that (which will be in January). I'm guessing I'll get a full check-up then.0 -
Hello this is my first time to post. I have been on Tamoxifen for 2 months and have had nausea fairly badly the first month, but seems to be leveling out some. I still keep the nausea medicine close by. Leg cramps and achy joints seem to be my big issues. I am not sure if I can take the over the counter stuff for this or not. I have bad knees anyway, but now I am really getting stiff all day instead of just for a few hours in the morning . Is this something that will subside like the nausea has and level out?0 -
Hi vis,
My nausea didn't last too long, maybe a few months and then it was only occasional.
I was on Tamox for 2 years and the joint issues never improved for me unless I took pain killers everyday and I didn't do that. I took Effexor and Gabapentin for the hot flushes and maybe that helped some of the joint pain but not all of it.
For some people, the SE's aren't too bad. Perhaps you will be one of those people who will get by with only a bit of nausea and some joint pain. It helps to be positive from the start. And it helps to keep moving even if it is walking or doing household tasks.
I wish you very few SE's vis. Be healthy
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