Bottle o Tamoxifen
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CPeachymom, sometimes the criteria used for such recommendations is utterly random, as in, with pills that don't matter when you take them, just say morning, cause people are more alert in the morning and more likely to make it part of their morning routine. So it might be about human psychology and behaviour and not have anything at all to do with the effectiveness of the pill. Yet with certain other meds in certain other situations, timing is very important. I just have no reason to believe that's the case with tamoxifen.
Scrafgal, what is the reason for taking you off tamox for surgery? I have read somewhere it makes it harder to heal. Not sure if that's true or not.
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My surgeon also recommended going off Tamox for surgery. I did for about 10 days before and after Exchange. I believe it's the possible clotting issues. (Some doctors do not recommend this, however, I've read here.)
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runor...I think that they are worried about blood clots, given whatever else they give you along with anesthesia. At least that is my PSs rationale. My MOs reason is that post some surgeries, you are not moving around a lot and THAT is why they worry about clots. Since I suffered 3 surgeries and 6 months of chemo, I'd had to die of a clot from this simple surgery. So, I will go off of it. I healed pretty fast when I went off of it for my other surgery last November.
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runor---I was also required to stop Tamoxifen for any surgeries due to increased risk of blood clots. I had to stop any blood thinners as well like my turmeric, fish oil, multivitamin and baby aspirin. They had me stop a week before surgery and restart a week after.
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Ah. Clots. Good to know. I know we are at increased risk but did not put it together with surgery. Sometimes I wonder what I'm thinking...
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Hmmmm ladies. I may call my PS and ask about stopping my Tamoxifen because I have my exchange next Thursday. He didn’t say anything about that, but neither did I.
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Runor - I ALWAYS wonder what I’m thinking lol!
I take tamoxifen in the morning because I wake up every 10 seconds if I take it at night.
I swear it causes wrinkles too! Then again maybe I’m just old. Maybe? Lol
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Egads, you are NOT old, the wrinkles are totally caused by tamoxifen and I think as part of my treatment I should be entitled to a face lift. You know you're too saggy when, as they clamp your boob in the mamm machine, your lower eyelid peels down and a breeze dries out your eyeball while you're being mammed. Waaay tooo much of you is in that machine! Tamoxifen baggy skin! I want it fixed!
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Welp, I thought I was doing pretty good on the big T. Jan and Feb were okay, but this month my RX was from another manufacturer.....4 doses in and I've got terrible leg cramps at night, nausea, ache just about everywhere and hot flashes.....how terrible.
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Runor - LMAO...omg do I hear ya! I felt like I was being sucked into a vast void during my last mammogram. And yes, facelift should be part of the package...same for the hands that go papery thin and decrepit looking! It’s bad enough that my chest was featured on Sesame Street during the ‘one of these things is not like the other’ song, but to add insult to injury the neck skin looks like the bark on the old oak tree
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One of these things is not like the other ... BA HA HA, peed myself! Oh yes, I have the mighty oak thing going on too. I'm like an Ent. (only some people will get that reference and it's from reading the book, twice, not the movie, which was torture). I work outdoors a lot without sunscreen so my arms and hands are pretty weathered. But lately, my god. I have gotten so suddenly and so shockingly old. I don't recognize myself.
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Had to google image search...ROFL.....purdy' as a picture!
1. Buy sunscreen.
2. pray.
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Tlfrank what manufacturer did you have before and what do you have now? Please share so we can all get the non leg crampy hot flashy one. Thanks!!!0
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I talked to my PS today. They said no worries with the Tamoxifen to keep taking it as usual. Wonder why some have us stop and others don’t.
Runor and Egads, I am “happy” to know I’m not the only one who has aged YEARS in a few months. I’m googling skin care and wrinkle treatment... I don’t like this SE. I always looked younger than I am. Not anymore. I feel older too
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i have found coconut oil at night is awesome. My skin looks like it's getting better. Don't need much either. I add lavender to it for fragrance.
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After only 2 months on tamoxifen I started getting lots of age spots on my face and chest. Has this happened to anyone else?
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Josie - yes. I've managed to get rid of them (took a long time) by making sure to use sunscreen every single day, using a well formulated AHA, and adding a vitamin c booster serum to my moisturizer. Most important was the sunscreen.
Shelabela - you might want to nix the lavender add in. Lavender is a skin sensitizing/irratant ingredient, and unfortunately added to A LOT of our lotions and potions by the industry. While I agree it smells lovely and miss it myself I don’t chance it on my skin. I’ve seen tons of online sites promoting it as good for your skin...the science says otherwise. Apparently it can break down your skins natural barrier (may not even be felt) not what any woman wants at any age. Over time it may cause problems/wrinkles. I spritz on perfume (especially at bedtime, not on face lol) to make up for the no scent in skincare policy I’ve adopted...besides I deserve to use scent at bedtime or any other time lol! The coconut oil is a good thing, glad its keeping you gorgeous!
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Egads007,
Thanks for the advice. I already use a daytime moisturizer with SPF everyday but maybe I need a true sunscreen on top of that. I had used Rodan and Fields Reverse regimen a while back so I pulled that back out and hoping it fades these spots. The toner and treatment have a lightening agent in them. Who would have thought that this tiny pill could age our skin soooooo quickly! It also makes me constantly wake up all night long......previously I was a very good sleeper. I hate now having to take something over the counter every night before bed to try to help me get restful sleep.
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Hi All: So good to "see" you all out there and read your responses. I guess that means we are all "suffering" together...
After much hesitation, I stared on Tamoxifen a week ago today and it is today for the first time that I'm feeling inexplicably nauseous and very, very tired...sounds like that's normal, right?
Much love to all of you amazing women!
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JOSIE- do I ever hear you on the sleep thing!!! I think I've had a total of 5 hours sleep in the last 4 years. *sigh* drives me nuts, but still wouldn't stop taking it.
AMYSCHAUMBRG - hi and welcome to Club Med Aka Club tamoxifen! I had the nausea at the start like you...it got better in a few weeks. I drank tons of water, helped a bit. So oh yeah it's normal. Don't lose hope, there are plenty of members here that don't get many side effects (lucky buggers lol), some get none at all. Strangely enough if you read through the men's posts it seems to me that they get much less side effects..but don't take that as a given, just my observation. Besides having to take more care with my skin and a tiny bit of hair thinning I don't suffer. I used to have huge problems with leg spasms but once I got my butt into a gym regularly the problem was basically gone. It a really varies from person to person. I think taking a positive frame of mind goes a long way. Given time you'll discover whether it's for you. Good to see you post! Much love right back to you...btw, you' part of the amazing women crew
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Hi amyschaumburg,and welcome to our community. Indeed, you are not alone, and I'm glad you found us all here.
Fatigue is a common side effect, as is nausea. You may find this page helpful as well, to help you know what to expect:
Hang in there Everyone!
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I am going to say something about the sleep thing. I think that going without sleep is very dangerous. It can lead to weight gain, diabetes and a number of other problems. I have to believe at some point, the negatives of that outweigh the benefit? The latest thing out about lack of sleep it that it leads to high rates of dementia.
Discuss.
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Trvler, I have also wondered about the impact on sleep and how that pans out, given the sleep disturbance is not good for health.
Sadly, I've noticed that I do sleep better when I have done some sort of exercise where I've worked up a sweat, during the day. Which is just what I feel like doing when I have not had a good night's sleep. Just walking is, apparently, not sufficient for me.
Sleep disturbance is, unfortunately, very common with perimenopause and menopause. So it may or may not be due to the Big T. The things that I find help (apart from exercise) are:
-have a small snack around 2-1.5 hours before bed (eg crackers and cheese or peanut butter, yogurt and granola)
-being active in the day (apart from exercise) ie getting out into the garden, walking around
-Sleep restriction. So that means going to bed a bit later (when I am really tired) and getting up early (and being very attentive to getting up around the same time). Yes, it means that I might not get quite as much sleep as I want, but it does mean that I get much better quality sleep when I am in bed. No naps, no lying in bed watching TV or posting on the forum... It's a pain, because I love lounging around in bed reading. What typically happens is I do this for a while, my sleep is good, so then I get relaxed and my sleep starts getting worse again. So then I have to be strict again for a few weeks. Its a bit like a sleep diet...
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Falconer - the first brand was Watson and I was relativley okay. This new brand is Mayne and I'm feeling terrible on it. I need to check with my pharmacy about getting the Watson back.
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Chiarara,
Thank you for your post. Your advice is excellent advice! I had such a tough time with my wrecked sleep after 2 months on Tamoxifen that I am already taking a break from it. I have a trip coming up with a couple of long flights and I am extremely paranoid about developing blood clots......even though my oncologist says the risk is low. Anyway, right or wrong, I decided to take a break until I get back from my trip. I may give Tamoxifen another try after that and incorporate your suggestions as well to see if that helps.
The whole Tamoxifen decision has been a tough one for me......apparently I am low risk for a recurrence, HER- and BRAC-. I talked to my oncologist and my benefit from taking Tamoxifen is a 3-4% benefit. It is a gamble.....hard to decide if the side effects and decreased quality of life are worth the possible benefit.
I am sure many of us warriors are struggling with this issue!
I love having these forums to connect and discuss issues that we are all experiencing. Not a club any of us wanted to be a member of but glad we all have our sisters on here to talk with
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Good morning everyone, I just checked my Tamoxifen and the manufacturer is Mayne. I started February 14th and had nausea the first 2 or 3 weeks. That is gone now. I do have terrible night sweats so I am having interrupted sleep, but I prefer that over the hot flashes during the day, which seemed to have decreased. I do feel like i am tired and unable to concentrate, but maybe that's just lack of s sleep, lol! Good luck everyone
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I have been on tamoxifen now for nearly 4 years. One thing I have learned is that the only thing I can count on is my own commitment to stay on this drug. What I mean is that after struggling mightily for awhile, I made up my mind that I was going to power through this somehow. It has meant that solutions that worked for awhile may not work forever and so it is important to stay open to making changes in the ways I have coped with tamoxifen. When I first started, my biggest issue was being awakened by night sweats and hot flashes and not being able to go back to sleep. I started taking it in them morning and that reduced the issues with sleep. However, after quite awhile, I started feeling nauseated in the morning and had to start eating breakfast more regularly. THEN, I found that I was feeling so nauseated in the morning that it was getting old. Even eating a light breakfast wasn't doing the trick. So then after like 2 years, I switched to taking it after dinner. The morning nausea is no longer an issue. I have coped with night time hot flashes by wearing very light pjs and keeping a ceiling fan on all night even during the winter. I have tried to fend off the cognitive sluggishness by upping my morning coffee intake. I take a baby aspirin and various supplements and feel like I am hanging in there. My point is just that a person might feel like she has this all figured out but then have to figure it out again (and again, and again). As i said, the only certainty is that I am not going to let side effects prevent me doing all that I can to avoid a recurrence (and lower risk in my other breast). As long as I am in the batter's box and swinging, I am going to come up with some way to stay on this medication.
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Great points Professor50, I feel the same way about staying on it. Thank you:)
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Trvler, I find there is a correlation between being tired (often caused by tamoxifen side effects that make it hard to sleep) and the diminished brain function. I notice that I am markedly more stupid than usual. When I am tired, the stupid goes off the scale. I have at times literally said to myself, THINK, DAMNIT, THINK!
Most recently I was doing something that required me to add fractions. Inches and fractions of inches. Do you think I could remember how to add fractions? I know how. I knew I knew this and yet ..... just an empty, blank void when I reached into the math part of my brain. I had nothing. Oh my god!
I look far older than I did a year ago. I look much older than my husband and that really bothers me. I hear women who are taken off hormone replacement therapy complain that their nice skin begins to age once they aren't getting those extra hormones. Well imagine how much worse ours ages when the few hormones we might have are denied to us? They say tamoxifen kills your sex drive. Looking like an old paper bag isn't so great for it either. With leg cramps, a dry hoo-hoo, thinning hair (REALLY thinning!!!) and a face like an old purse, I feel about as sexy as mud.
I do manage (so far) to get back to sleep after a sweat attack. But the leg cramps, oh sweet mother of god, I will get them in series, several a night. And then I am AFRAID to go back to sleep because being woken like that is NOT a happy thing!
What is amazing to me is that I am taking 10mg a day. HALF a dose and I still am having side effects!
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Egads007, thanks for the info.
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