Bottle o Tamoxifen
Comments
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Great news Tory ! Congratulations ~
I am with you with the hot flashes in the middle of the night. They are brutal. My electric bill should be huge with how low I need the AC on at night ~
Have a good day TAMOXIBABES!!!!!
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The hot flashes in the middle of the night bother me too. But I bought a Chillow and that really helps. I keep it in the fridge during the day so it's nice and cool. I go to bed without it and the first time I wake up, I put it on top of my pillow. A few minutes with the back of my head on it seems to be enough to cool me down and get back to sleep quickly.
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I'm thinking about getting a chillow, but I might give it a couple more weeks to see how things go. It seems like as soon as I wake up it goes away and then I'm cold. Crazy!
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I'm taking my daily 20 mg of Tamoxifen with a low dose Aspirin.
Anyone else doing this?
The reason I'm asking is that I am bruising easily - too easily. I have bruises in places that I don't even remember hitting.
Today I banged my right index finger in my dining room pocket door and it's swollen and turning lovely shades of black and blue.
I'm thinking that my blood is too thin - maybe from the aspirin?
Maybe I don't need take it or not take it everyday?
Any suggestions?
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OK, I'm joining you all on the Tamoxifen train. Had 3 lumpectomies and radiation last year and refused the Tamoxifen cause I couln't stand the thought of feeling WORSE AFTER MY RADIATION WAS OVER. So this year my sister 10 years younger (47, I'm 57) gets diagnosed withe Stage 3 Lobular carcinoma is on chemo and will be on radiation also. So besides being a super bummer for her, my risk goes up and I've agreed to Tamoxifen. Just waiting for my first prescription. So here I am and will keep in touch!
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Congrats Tory - that's great news!
MarieK - I'd say check with your doc, esp if you started the aspirin on your own rather than under doc's orders. Just my 2-cents.
A number of people mentioned weight gain. I noticed right away when I started tamox that my feelings of satiety were totally "off", and specifically that I didn't feel full when I would have before, and I had to consciously not eat more than before. Luckily, after a few months my normal feeding signals kicked in again. I'm only mentioning this because it might be affecting some of you too w/o your realizing it, so one suggestion esp for newbies would be to pay close attention whether your satiety feelings seem right and maintain normal eating regardless. I'm not saying to diet, just pay attention to maintain normal (pre-tamox) eating. Perhaps wt gain is assoc with change in metab instead, but obviously if we eat more w/o realizing it that's going to contribute too. 2-more cents worth.
Have a good day all - CS
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rkolycius I am so sorry to hear your news about your sister and you having to start Tamox. It really isn't that bad and I know everyone is different so if you do experience any SE maybe they wont be as bad. I had really bad headaches in the beginning and that has gotten really better I also experienced only 1 hot flash with nausea which I wonder if I am ever going to get more of them....hopefully not! My only real SE is insomnia and I have begun to work out more which I think is helping me sleep better at night. I have only been on the little white pill for 5 weeks now, so we will have to see. I am losing some weight but I am really trying this time as I put on a ton due to being an emotional eater........Good luck and keep us posted regarding how your sister is doing.
June
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I started Tamox yesterday, I have been on AI's (Arimidex and Aromasin), one was worse for me than the other both caused my sleep to be reduced to 4 hours per night and HORRIBLE joint pain. I am really hoping that I will not experience the same on Tamox. A month without the AI's has been spectacular, really have felt GREAT!!!!
I am taking Tamoxifen 2 times per day, which I thought odd. Does anyone else take it twice a day?
S
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Tory ~ my "chillow" just came in the mail, I'll let you know how it works !!!
Rkoly ~ so sorry to hear about your sister ! I hope she kicks cancers ass ~ I hope the tamoxifen winds up being a breeze for you.
I just started my third month of tamoxifen and am noticing I am exhausted. I was feeling great ~ I think the waking nearly every hour with a hot flash is finally catching up to me !
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Tomorrow my oncologist will be giving me a prescription for Tamoxifen. I'm scared and resistant.
I'm also overwhelmed by the enormity of this thread!! I don't even know where to begin! Mostly what I'm wondering is, how common are side effects? Some women have no side effects, some women experience extreme side effects... but does anyone have a sense of what's most common? I'm wondering if this thread (and breast cancer forums in general) gives a skewed picture of what it's really like, because I'm assuming most of us come to this thread to post about problems we're having with Tamoxifen, right? Women who have been on Tamoxifen for years with absolutely no issues would have no reason to come here and post about that, I'm assuming...similar to how I wouldn't go to a forum for people with asthma just to say, "Hey, my asthma's totally under control and I'm not having any problems!" There's be no point to that! So probably there are lots of women who are doing GREAT on Tamoxifen, and are just busy livin' their lives, but we won't know about it because they don't post here. It's easy to conclude that because the vast majority of women posting here are having problems with Tamoxifen, that most women who take Tamoxifen have problems with it, when that's maybe not true at all.
Does anyone who has been a part of this thread for a long(er) time have a sense of whether that's true or not?? HAVE you come across many women in this thread/on these boards who are doing really well on Tamoxifen with no SEs?
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rkolycius, So sorry to hear about your sister. I can understand your wanting to do more to prevent recurrances.
SusieMTN, most people take 20 mg 1x/day but some do 10 mg 2x/day. It's not wierd. If you find it annoying you could ask your doc if its ok to switch to the full dose just 1x/day.
Raili, Yes you're absolutely right, people who are having no probs are less likely to hang out here and reading this thread may convince you the SEs are more problematic than reality. I'll dig up a place that lists %'s of side effects but don't have time right now. You can also just google "tamoxifen side effects frequency" or something like that and see what you find. The most common annoying SEs seem to be hot flashes and joint/bone pain. Other noticeable ones that probably hit more than 10% of women are weight gains/losses, irritability, depression, nausea. Many women will experience menstrual changes (periods getting lighter or less frequent, or stopping altogether). Can't remember what else right now. But, that said, many women do JUST FINE on tamox, & hopefully that will be you! Unfortunately there's no predicting whether it'll be easy or medium or very difficult for any given woman. I for one do just fine on it. After the first 3 months most of my topsy-turvy things settled down and the biggest pain about it is just taking it. My periods are changing a bit and I got spotting this month but a discussion with my onc let me know its ok, but to keep track. (I'm 6 months in). I have some general things I think are different pre-BC like getting really tired sometimes, but that could be lingering effects of 2 surgeries/anesthesia and BC-stress generally in 6 months, or it could be tamox, I don't know. I know I'm not the only one on the thread who's tolerating it well, but I expect they'll pipe in. I'd name usernames but I can't recall for sure. Also, don't feel like you have to go back and read this whole thread, it would be impossible. Rather just jump in here and if you have Q's ask them and someone knowledgeable will probably pipe up to help. Or, just general concerns - we hold hands too.
Take care,
CS
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Raili: Well, I had typed up nice entry here and it just disappeared
! I'll try to redo. I have tolerated tamoxifen well. I have been on it since Oct 09. I always take mine with something to eat and haven't had problems with nausea. I do have a few hot flashes but not too bad. I have noticed some stiffness in my feet in the mornings but am fine once I get up and moving. My weight seems to be holding steady. I think most of us have been apprehensive about starting it--I know I had the bottle on my counter for a few days before I actually took that first pill! As CS said though, we are here to support each other. Don't hesitate to ask questions. TCK
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I would say I am tolerating tamoxifen. Hot flashes at night are pretty brutal and I think I am a bit tired but other than that for the most part I feel pretty normal ~
I try to just say the good the pill does outweigh the bad.
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I've been on tamoxifen since Nov 2008. I have found that the side effects come and go in cycles. Hot flashes and vaginal discharge are the most reliable, frequent side effects. I'm perimenopausal and was having some hot flashes even before, but tamox does make them more frequent. For a brief period in the beginning, I ate a lot and gained about 7 lbs., but increasing my exercise got rid of it and it's not been a problem since then. I had some joint pains in my knees, but I've been on Vit D 1000 IU a day for awhile now, and the pains seem to be almost nonexistent for the past couple of months. Other side effects are libido problems and insomnia, but these could be due to going through menopause, they were starting even before the tamox, worse now, but it's more than 2 years now, going through the irregular periods, so I can't tell which is the tamox and which is menopause.
I did have a natural remedy that worked for the hot flashes, tincture of rhubarb, I need to order some more, I've only found it online. It was recommended by my Onc.
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rkolycius I am so sorry about your sister.
Welcome to everyone who just started Tamoxifen.
My outlook on any side effects is that it sure beats having cancer again and going through everything all over again!
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Couldn't agree with you more, bcincolorado!
TCK
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I think the importance of Tamox is down played a lot which is not good, but we will see what happens with people that refuse to take it even with aggressive cancers, that's putting your life at an even greater risk. I'd rather take the risk and bite the bullet, nothing in life is hole proof and none of us ae getting out of this world alive. CH
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I'm definitely for NO RECURRANCES. Woo-hoo!
Interestingly, when I originally saw my onc, I was ok w/tamox so didn't argue with him when he recommended it. I realized only later I didn't know how strongly he felt that I in particular should take it. So in my onc appt Tues I was asking about the state of testing to understand whether its likely working for a given woman and he said, well, if you didn't want to stay on tamox then the Q is what we would do instead, which would be ovarian oblation/suppression+an AI. To which I said "Or nothing." He immediately replied, "I don't think that would be a good option in your case." I was glad to know he'd have been willing to argue about it. I don't want a recurrance, but I also don't want to take a drug my doc doesn't think is doing me much good.
raili and anyone else interested, drugs.com does a great job showing the prevalence of side effects in a number of clinical trials of tamoxifen. Notably, they show the SE % for both the tamox group and the non-tamox group(s) so that you can see how much more (or not) a given SE shows up with tamox compared to placebo or a different treatment method. Here's the page:
http://www.drugs.com/sfx/tamoxifen-side-effects.html
Have a good weekend everyone!
CS
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Hi Everybody,
Welcome newbies - especially rkolycius and raili. None of us want to be here but it is a great site with lots of excellent support and information sharing. Ask away and someone will come through for you.
I have been on the big T for 8 months. SE have been minimal and off and on. As someone has already said, there seems to be no rhyme to it and EVERY woman is different. I don't post a lot but read most days (although missed three weeks worth when on holiday and no-way could i read all the posts).
Check in when you can; read what you can; ask away; share what you want to and know that we are all in this together and will support each other across the globe.
Have a great w/end. We are on our way to the West Coast for four months. I will miss my wee baby for 6 weeks, when they will join us for a month ;-)))
getting ready to swim at Gammy and Granddad's - now, at almost 5 months weighing in at 18+ lbs - up from 7 lb 11oz ;-) (Mom is serving up whipping cream - no food yet!)
Caroline
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What a cutie bcamnb! Have a great trip.
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Hi Ralli,
I've been on Tamoxifen for over 2 years now. Before I started, I noticed that the most common side effects from Tamoxifen are things that I could expect to happen at my age whether or not I was taking the Tamoxifen.
That overlap of "is it Tamoxifen or is it age?" can skew people's experience.
I have hot flashes. They are definitely worse in hot weather, and all but disappear for me if I can stay cool. My periods are much shorter and lighter. No one complains about that side effect. For the vast majority of people, Tamoxifen's benefits far outweigh the risks and side effects. If you find that you are among those few who have difficulty coping with the side effects, stopping the Tamoxifen, sometimes even for a short time before resuming it, seems to resolve the offending side effects.
Welcome to the tamoxitrain, may you and all the new riders have a gentle ride.
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Hi Everyone. I have been reading alot of the posts on this board and was hoping to join in. I won't be starting Tamoxifen until I finish my chemo. I am 36 and premenopausal, I hope I don't have too many SE.
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Poohbear 21, I switched from Arimidex to Tamoxefin 2months ago and the only side effect I have had is hot flash once in a while and some weight gain.0
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Hi everyone,
Thanks so much for the welcome and info and reassurance! I picked up my Tamoxifen prescription... but it's still in the car.
I haven't been able to bring myself to even take it into the house, nevermind into my body. I think I'm developing a Tamoxifen phobia!!! Probably it won't be nearly as bad as I'm fearing... but I'm 31 years old and I don't want to start menopause now! Caroline, your baby is adorable.
CS, thanks for all the reassurance and that link. I will check it out.
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Haven't posted on this thread for awhile. Probably because I haven't had horrendous side effects
.I've been on Tamoxifen for 2 months now. I do have some hot flashes, but I was having them before. I'm 50 but not menopausal yet(I wish). I would love it if the Tamoxifen made my periods lighter, but time will tell on that one. I have not gained any weight-in fact, I think I've lost a little. I have some muscle pain, but that could also be due to the fact that I pretty much stopped exercising during the trauma of my breast cancer diagnosis, and have just started up again.
Mary
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Raili - you're not the only one here who has done that. I let mine sit on the counter for several days (after waiting several days just to pick it up) before taking it and I've seen others who have said that same thing. Like we need to stare at it for a while before summoning the courage to take it. Which is sort of silly. My experience so far is that it's nothing as bad as some of the other stuff - surgery, chemo, radiation, whatever.
31 is young. I can understand why you're not ready to have menopausal side effects. I'm 39, which seems much older (I think my looming 40th birthday on top of this whole crappy experience is making me feel old), and I didn't feel ready either. But the truth is that they're just side effects, not full-blown menopause, not that that really matters - a hot flash is a hot flash. You don't even know yet if you'll have them. And in my case, well, sadly I'm done having kids, so really what difference does it make if I'm menopausal or not? I've had a lot of internal monologues about this, can you tell? Maybe tomorrow you can bring them in from the car. Stare at the bottle for a litte while and ask yourself if you're ready to have cancer again. Then maybe wait another day, and then just dive in. We're all here to support each other.
I'm a couple days shy of a month on Tamoxifen and I have a hot flash every once in a while. I don't like it, but they're pretty fast and they're not so frequent that I'm miserable. Like everything else, you just deal with it and move on.
Good luck!
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Hi Raili,
' wish I could claim JB as MY baby - actually I am the Gammy and he is parented by my son and (the world's best) daughter in law. But I agree - he is adorable ;-) and a real sweetie to boot. His earlier faces made everyone's day a bit brighter on this site.
I think most of us on this site waited for awhile before swallowing that first pill - and we all had our own excuses. Mine was I got the meds a week or so before the end of the month. I decided to wait til the 1st of the next month - a date I would/could remember (why I am not really sure - but maybe so I can mark 1 month, 1 year, 5 years????)
Just think of all the pluses - it will reduce recurrence not only in the BC breast but also up to 40% in the other one. And its effects will go well beyond the 5 years. I for one don't want ANY repeat - so I down my 30mg (higher because I am an intermediate metabolizer - although many IM women are on the standard 20 mg dose) with supper. That works best for me - always with food and evening.
Best of luck,
C
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I've been putting it off since April, Had my exchange surgery last Thursday and took my first pill 2 hours ago. I Hope and plan to not gain weight. I think I could have found an excuse to last me till July but I need to see the onc at the end of the month. My CYP test came back good so I have no excuses. I feel like I just jumped into the deep end!
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Hey Waldo - Welcome to this thread, although sorry you have the need to be here. It's funny to feel like I sort of "know" someone from another thread but these boards create community, don't they. If you can manage it, don't worry too much about the tamox in advance - just focus on the benefits and see how it goes. Perhaps better is just to not focus on it at all. Here's wishing you'll be one to get all benefit and no icky side effects!!!
Raili (and other newbies) - Wow, you really are young, I'm so sorry you're going through this at such an age. But, as tory said, while you might get some menopause-like symptoms, tamoxifen doesn't cause menopause. Perhaps you know that already, but in case not (a lot of people don't realize the differences...I know I didn't at the start), I'll note a couple details I've learned in the last 6 months. First, the possible SEs that appear like menopause are hot flashes and periods stopping, and depending on the study, you'll hear #s like 30-70% of women get additional hot flashes and about 25% have periods stop altogether. Another chunk of women have altered periods, like less frequent and/or lighter. So, there's an even or more chance you won't be in either group.
Second, everything I've read (which is WAY too much, sigh) says that younger premenopausal women like yourself go back to having regular menses and can have children again after they stop tamoxifen. Some of us who are on the brink of menopause in the first place (I'm 47) may not since perimenopausemay happen simultaneously with the tamox. Anyway, just some thoughts for you in case you weren't aware of these differences from your body's true menopause, although it's probably small comfort if you were hoping to start a family soon. Best wishes to you too for all benefit and no SEs!!Finally just a note for all the new gals here that its pretty frequent that side effects felt in the first several months taper off. That was my experience with nausea & stomachaches. My point is even if you get some annoying SE early, there's some chance it will fade so don't give up hope immediately.
CS
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Ralli, I know how scary it is to read all the side effects related to one little pill. If you do look at the SE's and the SE of placebo many of them are quite similar. I decided to take the pill and forget about it. I literally jumped into the deep end. I was a little nervous at first, but I am going to just forget about it. Also, I'm not sure where you live, but it is summer and the heat in your car may not be within the storage temps for tamoxifen- its better to take it out of the hot car and into the house and stick it in a drawer that is at room temp until you decide you are ready to take it. When and if you do take it, you want it to have the beneficial effects that you are taking it for.
CS, It's funny how the threads cross. There are many people who are on all of the other threads i post to except this one, so it's nice to know someone else here, as well.
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