Bottle o Tamoxifen
Comments
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hahaha - lala1, so very true!
Question ladies: for those that have had side effects from the Tamoxifen, have any gone away?
I am tired and tired of being tired. I can't work out, heck I can barely climb the stairs! I use to do hour long workouts and 80+km bike rides on top of cleaning houses for a living. It's depressing, what kind of life can I have if all I want to do is lay on the couch or lay in bed? Please tell me there is a way to get my energy back. Yesterday I took the kids to see a movie and I was falling asleep during it, it was a good movie so no that's not what put me to sleep. lol
Cheryl
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Very true la la! Vampeyes, I have noticed the fatigue, but I blamed it on not exercising. It is like a vicious circle. If I exercised I think I would have more energy. I didn't think about it being from the Tamoxifen. Hmmmm, I wonder if it's the lack of exercise or the Tamoxifen? Do a lot of people complain of fatigue while on it?
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Hi Cheryl, and to all the newbies on Tamoxifen,
Some side effects do go away like the tired feeling. I've been on Tamoxifen for almost 6 months and I felt tired for the first 2 week when I started taking it, and after the 2 weeks was over I started feeling much better and got my energy back! Happy Dance! I noticed that some of my side effects like pelvic pain have become more mild and easier to live with as the months went on.
One of my friends who is a nurse told me early on think of it like Tamoxifen growing pains and that your body will get used to it just hang in there and take lots of naps in the meantime.
Sending Hugs and Love to all Good Luck to everyone!
Sara
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I've been on the ol' Tee-Mox just a tad over 4 years. I used to suffer the 'my feet have been beaten within an inch of their lives' feeling until I joined a gym, hired a trainer and started lifting weights combined with cardio. If I take a break from the gym for more than say 5 days the feet start screaming at me to get my lazy derriere back into the gym. No biggie I enjoy working out, lets me know I'm alive.....or at least insane. I can deal with the hair thinning....Trump has actually asked me for comb over advice. I can deal with bursting into tears occasionally (and for no reason besides hearing something soppy). Dry skin, trouble getting weight down, fatigue, meh....no problem as I'm very grateful to have meds that just might give me a fighting chance.
What I can't get past, and pardon my wording here, but really pisses me off to no end....the HOT flash. I get approx. 2 a day....so I guess I'm very lucky. So why am I complaining? Timing my dears, it's all in the timing.....EVERY SINGLE TIME I get out of the shower or complete my makeup - BOOM, it hits. It's as if it KNOWS and lurks in the background waiting to make me look like Marilyn Manson and feel like a sweaty runner completing a 30 mile marathon. I've sweated off more dollars in product within minutes of application that I might as well start using Dollar Store cosmetics, creams, lotions and potions. I've tried all the tricks, nothing works, so I've grown to expect it.......don't have to like it, but expect it.
Just my whiny 2 cents worth
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I hear you Egads about the hot flashes. I mostly get them at night but had one at work last week that left me with raccoon eyes during the middle of a meeting. Even waterproof eyeliner doesn’t hold up to my hot flashes.
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I never had much fatigue (fatigue, what a limp wristed word for when you feel fall on your face tired) and the other side effects have eased off. But wait. No. Back for round two! The legs cramp. Oh dear lord in heaven, the leg cramps. I had THREE attacks the other night, leaping out of bed to hobble around in the dark, walk it off, walk it off, trip over the vacuum cleaner and the dog. Trying to walk while digging fingers into my thigh and swearing between gritted teeth trying not to wake husband. And then when it finally passes you're afraid to go to sleep cause you know there's another one, waiting, lurking, just doze off and stretch that leg out and BOOM got you again! If I have fatigue now it's because I'm scared to go to sleep and move a leg in such a way as to trigger a cramp. I fear the cramps!
Hair is still thinning. I have aged 15 years. Periods stopped instantly and completely. Hot flashes in day, luckily not bad enough to melt my mascara, but seem worse at night in bed. I am a balding, sweating, cramping ball of sexy. Who wouldn't want to get with this?
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Still doing great on Tamoxifen. No further hair shedding, other than what was lost after radiation. Hair regrowth, any aches can be headed off with magnesium. Walking several miles every day. Take 50,000 units of Vitamin D per week. Mostly vegetarian diet. Getting plenty of rest. Better than I was before breast cancer.
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vampeyes---Thought I'd share one thing I was told when diagnosed. My dad is a retired doctor and when I was diagnosed he sat me down and offered some advice. One thing he told me was to expect to be tired....not just tired but so tired you can barely hold a conversation. He feels that anesthesia does a real number on some people. My doctor told me to be prepared to have 2 or 3 months of tired but dad said BS! He thinks it hits you hard for about a year. He told me that whenever I felt really really tired to just sit down and nap, whenever I could, wherever I could. He feels that's one of the best things we can do for our bodies when recovering from all this. So that was what I did. I'm not a napper normally but I took LOTS of them that first year. And I joined a gym. I dragged myself there and forced myself to workout and sure enough, eventually I started feeling less and less tired till one day I didn't need a nap! Don't get me wrong....about once a month or so I will find myself so tired I can't even think. And it's been 5 years! But I just find time and get a quick nap even if just for 5 minutes and then I move on. Don't worry. It'll get better. You got this.
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thanks for the advice about asking my MO until I DO understand.!
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Runor- ouch! I've had the occasional leg, ankle, toe cramps that are both excruciating and annoyong. No magic words or tips, just a big virtual hug. Hope they don't continue.
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I’ve been on the lovely pill of hormonal imbalance since September. I started the week after my DMX. The HOT flashes, if only they would flash. And go away as quickly as they come on. I’ll be talking to someone and BLAM. No reason. Just hot as the 9th circle of Dante’s Inferno. It was below 20 outside and I was out there trying to cool off without getting sick. I was H. O. T. That and the night sweats have been my constant companion since I started this wonderful pill. I go to bed early (ok, well, not tonight as you can tell) and sleep off and on through the night. Up for sweats. Strip. Change. Back to sleep. Repeat. I stay tired. I don’t know if it is the not sleeping well or the Tamoxifen. Or both. Who knows. I am tired of being tired. I try to take naps when I can, but it doesn’t happen everyday. By the way, who was the genius that started this time change stuff. It did not help the tiredness!
I wish I could say I don’t have periods. Why is it the one side effect I wouldn’t mind I don’t get? Still regular. Yay. And emotional. I cry at daggum commercials. I’m not even talking about the SPCA ones (I mean I always cry at those too). I sometimes feel like I’m on the verge of a breakdown and I have to talk myself out of it. I’m either weepy or angry
My new SE are cramps in my feet, legs and hands. My thumb will turn inward and oh my gosh does it hurt! That usually happens at work (of course). The feet and legs I notice more at night. I haven’t found shoes that make it any better for my feet. But they feel like they are in a vice.
Wow. What a whiner I became there for a minute. I guess we all deserve to let it out, don’t we?
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TaRenee- Mind if I join you? I just posted this elsewhere: 'So, I had another fill today. Good grief these puppies are high and tight. I see the radiation oncologist next week to find out if I need radiation, per my oncologist's request. If so I get to live with these crazy-full expanders until after. Fabulous. But we do what we have to do, right? Ok. Whinefest over. Back to being thankful for something.'
Plus 3-4 hours of bad sleep a night, hot flashes, crying because the sky is blue, weight gain, irritable, achy joints. On a positive note I haven't had a period since the week before my surgery. So, I suppose that's what I'll be thankful for. I did see my family doc, had a good long chat with her and she gave me a script for Effexor. Yay, another med.
Hang in there y'all. We can do this. We just have to.
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I used to get calf spasms so bad...woke up once to watch my calf turning involuntarily toward my shin....took 1.5 weeks to stop hurting! What I found to totally obliterate all the leg spasms was doing lunges and squats...seriously stopped it from happening after about 2 weeks of doing them.
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I think the fatigue is lack of sleep caused by the Tamoxifen. At least for me it is. My temperature if off most of the time, either too hot or too cold. Hard to get into a deep sleep. And my husband snores. I usually go into the guest bedroom around 1 am when he starts snoring.
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maybe you should start out in the guest bedroom? We slept separately for about 6 months when my husband snored at his worst. He has since gotten a snore guard.but I had me some good sleeps on my own. :-)0
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Snoring- hubby sleeps in the spare room, and I have some custom-fit earplugs. Otherwise, our marriage would end, due to my irritability when underslept. My sleep (thanks to evicting husband, and some brew my naturopath cooked up) is much improved from a month ago.
My skin is much better then it was before I took T- I'm enjoying that side effect. And in fact, I read that tamoxifen can actually make estrogen more available in your skin, which is good for wound healing and general skin health. I will hold on to that SE, thank you.
I'm now coming up to 3 months on the big T.
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I also sleep separate from DH quite often. Crazy how much my sleep has improved. I use a fan which gives me white noise as well as relief when hot flashes hit.I also keep my room as dark as possible. And when first diagnosed, I would take a very tiny dose of melatonin of 0.3 mg to help me sleep which worked wonders. Then once my sleep was regulated I weaned myself off. Recently I went back on when I finished my 5 years on Tamoxifen. I had withdrawal symptoms similar to what I had going on it and my sleep suffered. But now after a few weeks back on, my sleep is good again (so good sometimes I sleep 9 hours!) so I may get back off. But I've also read it's really good for preventing recurrence so I haven't made up my mind. I wonder how many people would get a better night's sleep if they slept alone.
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I just want to say, you ladies are amazing. I've read through so many posts, and your stories have given me so much strength. I now have two doses of Tamoxifen in me. I followed the advice I've seen here, and I take it at night. My pharmacist stressed that I need to take it at the same time every day, so 9:00 pm it is! Yesterday, my head felt strange...somewhat dizzy...like my brain was just kind of rattling around in there. I think I'm feeling ok today, although I haven't changed out of my pj's yet! Going to work on some craft projects today. I return to work Monday, my school district has been on spring break. I'm nervous about getting up early again. I've been sleeping in until 10:00 every day, because I'm having trouble falling asleep at night. Thank you all for sharing your stories!
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I have one month under my belt, I was also dizzy the first week or so, just kind of hazy. A few night sweats but nothing that has kept me up too long, some fatigue and lo and behold my period showed up exactly 28 days from the last one. It has done this since had to stop the pill at diagnosis. Interesting to see if it stays around and regular. So far no major SE’s or concerns , hope it keeps up.
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Since we're talking about sleep.... I wake up about every hour with a hot flash although I haven't taken Tamoxifen since thanksgiving. Thats after it takes me several hour of tossing/turning/flashing trying to get to sleep in the first place. My mind won't shut off! I'm not worried, just thinking incidental thoughts. Ambien works wonders but I don't want to be addicted to it so I only take it when I absolutely HAVE to get some sleep. I take melatonin every night and sometimes Benedryl without much luck. Speaking of cold meds, last month my hubby and I both had a cold or possibly flu. I was taking a variety of cough meds, decongestants, expectorants, antihistamines, you name it, I took it. THE HOT FLASHES STOPPED! Not sure which coctail did it but will try each one separately to figure it out.
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I like to start in my room because I watch TV and there is no tv in the guest room. I watch old episodes of Johnny Carson which takes my mind off whatever I am ruminating about on that day. But even when I got in the guest room, I wake up several more times.
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Blownaway, are you off Tamoxifen because you hit the 5 year mark? That’s crazy you are getting so many hot flashes and aren’t taking this stuff anymore. I miss sleeping through a night without having these.
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I stopped taking Tamoxifen after 3-1/2 years on my own. Not real proud of being a quitter, though. I will most likely try something else hopefully with s/e's I can stand without having to add gabapentin and duloxetine to the mix. It was the constant bone pain that I couldn't deal with anymore. The hotflashes must be strictly menopausal. I had them so bad before b/c that I took premarin for 12 years. Of course, the first thing to go after dx was the hrt. I've learned since thanksgiving that I can't blame the hotflashes on Tamoxifen.
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Teachermom, I started on Tamoxifen in January and had a "head feels weird"experience daily for about a week, then it went away. Hoping the same for you. I'm 59 and post-menopausal, so waking up in the middle of the night, plus occasional leg cramps, have been a fact of life even before the BC diagnosis. Hoping minimal SEs for you and everyone else riding the T train.
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Just having t take this stuff isn’t anyone’s fun. Hugs to all of you.
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Lala
I'm interested in something you said a few days ago, about the effects of general anaesthetics. I recovered really easily from my first surgery and surprised myself at the way I was back to normal within a few days. It was only a WLE, but with oncoplastic reconstruction, so about 3 hours. I didn't really have any pain to speak of and no fatigue.
But move forward another three lots of surgery in the next 14 months (a cavity shave and two reductions to the other side ) and I was a complete wreck, couldn't stop crying, too tired to drag myself round and just not really able to pick myself up and carry on. And I felt really guilty that I should have been back to normal, like I was making a fuss over nothing. And I was a bit worse after every one, I would say it took two months to really feel like myself again after the last operation.
So your explanation about the effects of general anaesthetic makes sense to me, that maybe the effect accumulates in your system. It's either that or I just became more and more of a wuss each time!
The only other difference I can think of...I didn't start taking tamoxifen till after the margin shave, so maybe it was the tamoxifen mood swings...
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Dizzybee--I bet it was the anesthesia. I was actually surprised when he told me that because my dad is one of those old school doctors who just "cuts and stitches" more or less. When I was a kid he taught me to tell patients that called the house (because back then that's what they did!) to take 2 aspirin and sit in a warm tub of water!! Now, he was a urologist then and thought anything bladder related could be solved with that,
but it was very indicative of his feelings about "being sick". He pretty much felt everyone could suck it up. Now 40+ years later and I found it was a real change of attitude. He feels surgeries definitely have a cumulative effect, and he gets really pissed cause he thinks doctors should be doing more for their patients as far as helping when they have to have multiple surgeries. So bottom line....if a crotchety old fart like my dad thinks anesthesia can do such a number on our bodies, then I figure I'll listen! And when I needed to nap I did, and anyone who wondered why I was taking so many could just go suck an egg! My body, my fatigue, my solution. That was one of the things that taught me to quit saying yes to so many people and start taking care of myself first. 0 -
In response to the poster who was told by their pharmacist to be sure to take the pill at the same time every day...why? I find this very curious. We know that tamoxifen has a very long half life, which means it hangs around in detectable quantity in your system for a long time. So is the pharmacist implying, "Oh my god, you have to take this at exactly the same time otherwise your tamox levels will dip dangerously low and you will suddenly be consumed by lurking cancer cells just waiting for you to be half an hour late with your pill!" Cause if he's saying that, I think he's full of shit. I think he's laying a worry on you where no hyper vigilant pill taking needs to exist. People say all sorts of things for all sorts of reasons, maybe to make it look like they are dispensing sound medical advice along with your pills. I don't know. But next time someone throws down this ' you must take this pill at the same time every day', ask why. Why? And if they give you some answer, ask where you can find data and research to support this information. Maybe there is a solid reason to take the pills exactly at the same time. Or maybe not. Find out.
Tamoxifen is a little white tablet and not a stick of dynamite. Frankly, dynamite is way more fun! Until you've blown some trees out of the ground, you just haven't lived! But rest assured that if you miss the timing of your pill taking by an hour or even two, the world will not end, no puppies will be kicked. Focusing on the timing of the pill is a way to provide a false feeling that we are meeting the demanding sacrifice to the cancer gods. See how good I am, see how I take my pill on time, see how vigilant and dutiful I'm being, please don't give me cancer again. There is a little magic thinking attached to rigid pill taking and the belief that it provides any more protection than the loosey-goosey pill takers. And that just ain't the truth.
So, please, do NOT add worry over pill taking to an already stressful situation. You'll remember your pill. You'll take it. Might be at 9, might be at 11. Whatever. You are doing fine.
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Agreed runor...it has a very long half life and there is no need to panic if the time shifts a little...I am preparing for a revision surgery in May and they want me off of it for 2 weeks before and after...I did the same for my exchange surgery....
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Funny thing is my pharmacy just switched to a new system and now your prescriptions come with a little chart that tells you when to take them. My Tamoxifen says to take it in the morning even though I’ve always taken it in the evening. I have no plans to switch. Just curious what they base that recommended time on?
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