Bottle o Tamoxifen
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creampuff, YAY for you for NED!!! Whoo hoo!! Doing the snoopy dance for you!!
Barbie! Nice to "see" you!! Your picture is beautiful!! Please keep us posted on your TVUS results!!
Well, I think I may have opened the flood gates in spending... The latest now is a new oven.
Turned mine on the other day and it make a big "boom" sound... NOT GOOD when you have a gas oven. I think, how ironic would it be...if I survive the BIG C, and I BLOW MYSELF to smithereens with a gas oven problem. I shouldn't joke about that b/c it does happen to people. Anyhow, I promptly turned the oven off (it's 30+ years old and needs to be replaced anyway). Went to my mom and pop appliance store who could install the new oven on Friday... Unfortunately, I had the choice between 2 ovens...one cheap and one expensive, and of course they only have the expensive one. Double grrrrrrrrrrrrr. But, I feel like my back is up against the wall...Welcome to the new gals!! I've been lucky with little to no SE's. A few night "flushes" here and there, but nothing I can't tolerate. Can't really coment on the whole weight gain thing as I work for a food company and I literally eat Italian food all day (and occasionally Ben & Jerry's and Breyer's ice cream!!)
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VirginiaNJ,
I want your job!
As an answer for my weight gain, I am not eating more than I was before my dx. I am eating better now, although I have always eaten a good diet. It just doesn't make sense to me.
Thanks for all the "welcome's" ladies!
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I have stayed the same weight. I exercise about 5 times a week (cardio) and weights about 3 times a week. There is a gym where I work so it is very convenient. Metabolism may have something to do with it. I'm 56 and started menopause late (January '08 @ 55 - tamoxifen may have pushed me into menopause).
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Makraz- I am VERY lucky to have a job I really love...although it is NOT friendly to my waistline!
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A quick hello to all Tamoxi-train passengers, old and new!
It's Thursday morning, and still immersed in the unique hell that is an elementary school right before the holidays. It's almost over, though...woohoo! Two weeks of vacation at home stretching endlessly before me--I can't wait.
Re: weight gain on Tamox.--I don't think I've gained or lost as a result of taking it. I've gained lately but the problem is Christmas cookies, candy, etc. My plan for the holiday is to get back into the gym...a little elliptical trainer, some weights, maybe some aqua-jogging. Wish me luck.
My main gripe right now--my hips. I've been using the Traumeel this week morning and night, and it seems to be helping some. This aching at night is awful. A few more night sweats lately, and one killer hot flash in a 1st grade classroom...the kids were staring, and the young, cute, incredibly fit teacher was discreetly opening windows...ah, menopause.
Love all you girls...take care!
Lynn
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Hi Ladies, I want to have a seat on this tamx train to!! I finished chemo on 8/20 and had a bilateral w/ immediate recon on 10/22. My docs thought I was gonna have to have rads so they told me not to take the tamx yet. Well, after surgery my pathology repot was so good that they changed their minds on rads now they say I dont need it. I had no invasive cells left, 1 node with only a few dead cells (6 cells to be exact), and the surgeon got clear margins. So I am gonna start takin tamx soon. I must admit I got nervous about the hair thinning.
I am just starting to grow my hair back and the thought of it thinning freaks me out. It seems so vain, but I know you ladies know how I feel. Has anyone had any strange side effects or is it ok?? Thanks ladies!Tracey
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Welcome new tamoxi-pals! I've been taking it since May 08. As far as my weight is concerned... I've yo-yoed with 5-10 pounds since I finished chemo in April. For the past 2 months though I 've lost weight (10lbs) mostly by drastically reducing my sugar intake and getting on my treadmill every morning...which I hate btw! My problem with Tamox is strange pains. Some joint, bone and muscle. Also pelvic and right groin pain(I know that I have an ovarian cyst and fibroids) and I think I can even feel a slightly swollen lymph node in my right groin that I'm completely terrified about!!! I know my terror is the main contributor to my recent weight loss. Anyway, I'm scheduled for a pelvic ct, c-spine ct, and aTV/US this Fri. but my appt. with my onc isn't until the 29th. I have a feeling that he'll call me sooner if there are any problems. None of my SE's or symptoms are particularly bothersome or painful. It's the WORRY that it's cancer spreading and not just SE's that's driving me crazy. If I knew for sure that all these symptoms were just from the tamox I would be soo relieved. I can live with the SE's. Anybody else have the pelvic pain or lymph node swelling? Does anybody know if cysts or fibroids can cause lymph nodes to swell? I've learned so much from you guys I'm so thankful for all your posts!! BTW I have not noticed any hair thinning...thank GOD!
Shari
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Welcome new Tamoxisisters!
I have been steadily, slowly losing weight on weight watchers. After radiation, I had no energy so I laid on the couch, slept and ate, and gained 20 pounds. I had always been athletic, so I started that up again and am feeling healthy. We have enough snow for me to head out on snowshoes today!
Basha
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Shari - I've had pelvic pain since starting Tamox in March. Not constant, but certainly daily. Pain, pressure, bloating and sometimes sharp. I too have ovarian cysts and one small fibroid. I am waiting on my TVUS results from Tuesday. Kind of aggitated that I don't have them yet. They were following a couple of complicated cysts in my right ovary. I don't have lymph node swelling that I know of. In fact, I'm not quite sure what a swollen lymph node feels like, even from a sore throat. I just cannot visualize it. Best of luck with your tests. Let us know what you hear.
I brought cookies into work today that I got last night at a cookie exchange and I'm going to try really hard to avoid them. But it is 8:20 now and my willpower is waining.
Have a good day all!
Barbie
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Good morning and welcome to our new friends!
It's the calm before the storm today, we are expecting snow for tomorrow. Lynn - the kids will be going crazy at school tomorrow if they even see a flake in the sky - and I'm talking high school kids! I don't know how you teachers do it!
As far as weight goes, I've maintained my weight since on Tamaxofin (6 months now). I can fluctuate between 3-5 pounds (up or down) on any given month, depending on what's going on and how many parties we go to! There is a # that I like to maintain. and I try to stay within that 3-5 pound range. I do watch how I eat and walk daily (except for the last month, work has been crazy). I need to get back to lifting weights, no excuse as I have an exercise room in my house with a universal, treadmill, bike, etc. Lifting weights helps the metabolism and the flabby arms!! LOL!
The holidays are always difficult to watch what you eat, but I figure a small serving is ok, just don't overdue it. Life is way too short to forbid any foods that you enjoy, right ladies!
One of my friends gave me some chamamile tea with vanilla. Her massage therapist says it helps you sleep. Anyone hear of that? I am finding that I'll wake up after 4 or so hours of sleep from the hot flashes, and then have difficulty getting back to sleep. Maybe I'll try that?
Enjoy the day, hugs to everyone!
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Muph- yes Chamomile herbal tea is good for sleeping, so they say. I hope that it's LIPTON tea!
Barbie- LOL with the Xmas cookies... I was eating onion dip at 10 am this morning. UGH
I hear you ladies with the calm before the storm... They are saying we are going to get hit here in NYC too... My car needs to be serviced tomorrow and the dealership is coming to pick it up at my house...I'm nervious about that...don't want the guy to crash my car!! Tomorrow is also new oven day! Whoo hoo. Saturday party at my house. I'm woefully unprepared.
Hugs Shari... I know it's so hard not to thinkg the worst when anything is happenig. Isnt' that now a terrible curse we all have? The "Big C" and dark thoughts always looming in the backs of our minds...
Welcome Tracey!! Good news no rads for you!! They are a pain in the butt!! I have not had any thinning of my hair on Tamox... My hair is crazy curly (chemo curls). I have not cut my hair once since it started growing back...and it started growing in Aug '07... Guess I'm overdue for a cut, but I'm afraid that I will cut all the curls off...
Harley- got your "cookie" e--- haven't had a chance to check it out... Thinking of you...
Lynn- whoo hoo with school almost being over... I admire your plan for exercise! I'm going to be doing 12 ounce curls over the break... And, LOTS of cookie tast testing...(for the record, my company does NOT make cookies).
Ok, better earn that paycheck!
Hugs to all not mentioned specifically by name!! Think of you all often!!
Virginia
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Hello all, I just filled my prescription today but have not taken one yet. I guess I am walking alongside the train, afraid to jump on. I finished chemo four weeks ago, still trying to get my counts back to normal so I can stop having blood work and onc visits. I am scheduled for an ob/gyn exam, bone density and a bone scan. Is this pretty normal when starting tamoxifen?
I am going to try to catch up on this whole thread. I'm about 21 pages in, but wanted to pop in here and tell you that I am joining.
Chris
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Welcome Chris,
All those tests mean you have a thorough doc!
We all felt nervous to start the big T. I just passed a year and I am thriving with few side effects.
Basha
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dmh--my oncologist won't blame my achiness on tamox either--says it's more from my loss of estrogen (lost ovaries due to rupture). He says unfortunately people tend to blame tamox for everything.
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Gals,
Oncologists tend to blame nothing on Tamoxifen. I'm getting angry that so many of our docs say it's not the Tamox. Tamox causes us to lose estrogen, which creates many of these symptoms; achy joints, insomnia, bloating, and moodiness. Good to rant it out. I say we are the best judges of our symptoms.
Basha
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I am about a week away from starting Tamoxifen and I just noticed that my prescription says each dose is 20mg. Is that the typical dosage? I seem to remember reading 5 mg on this thread! I am already nervous about side effects (although it does seem like a lot of you are doing just fine on it!) and I was wondering if there is any relation to side effects and dosage amount. Does anyone else take 20 mg?
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Margot,
Welcome to the Tamoxi-train!
Yes, 20 mg is the standard dosage. I don't know anyone who is taking a different amount, except for a few who started with 10mg, just because they may have been worried about se's, and wanted to start slow, or if they did have troublesome se's, there may have been someone who, with their dr., decided to just take 10mg. But, I wouldn't recommend taking 1/2 dose, unless you had problems, and then discussed it with your dr. first.
During the Holidays, join me in the dessert car, in the alcohol car, ... well, you get the idea!
Wishing you and yours VERY HAPPY HOLIDAYS!!
Harley0 -
Harley,
Thanks so much for the information. I feel MUCH better!! How long have you been taking Tamoxifen and how has it been? I will most certainly join you in the dessert and/or alcohol car on this Tamoxi-train!! Glad to have some people to talk to about it!
Margot
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Hi Chris -
I just finished chemo 2 weeks ago and about to start Tamoxifen too. Maybe we can compare notes! I have my exchange surgery scheduled for Jan 5th and then I have to have radiation in February. I am very much hoping to not have side effects from the Tamoxifen! while all that is going on!
Margot
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20 mg, once a day, is the standard dose of tamoxifen. I just finished my 5 years of tamox about 2 months ago. It's generally well tolerated by most, with the most common SE being hot flashes. Fortunately I tolerated it very well overall. I would just recommend a yearly transvaginal ultrasound to monitor both the uterine lining and the ovaries.
Anne
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Hi Barbie, and the rest of you great passengers, new and old!
Barbie--Have you got your US results yet? Has any of your docs ever said you could blame the pelvic pain on cysts or fibroids or tamox? I had my scans and US yesterday so I think I'll call my onc. Mon. to see if I can get results.
Basha--I'm with you... oncs. do not want to blame tamox. for anything except maybe hot flashes...they need to check out this thread!!
Virginia--Hugs back to you! I agree that the worst thing about the Big C( for me ) is what it's done to me psychologically, and I didn't expect that at all! I foolishly thought that when I was done with treatment I would put it all behind me and only worry about it just before check-ups etc. But I also thought I would feel normal... and I don't. That's what keeps my mind in those dark places. Don't get me wrong I've managed to return to all my prior responsibilities... I mean none of my symptoms are debilitating or anything I just wish I could stop over- thinking everthing!!! Anybody know of a pill to cure that? LOL!
To all you new-comers welcome! It's been my observation that most people do just fine on tamox. And likely that will be the case for you, just remember we're all here for you!
Shari
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Thanks, Anne! I was wondering about the hot flashes - I never got any hot flashes on chemo despite the fact that my period completely stopped after the first treatment. I am 44 years old and had regular periods before chemo. So, if I stay 'menopausal' - would the Tamoxifen cause another change that would lead to hot flashes?
Also - I've read a lot about on this thread about people gaining weight on Tamox (which I do NOT want to do!) but I was wondering if that is truly a side effect.
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Good morning, ladies, from rainy southern Japan!
<:AtomicElement>Wow...lots of new folks--welcome! I think it's best just to start taking Tamox and cross your fingers re: SEs. It's impossible to predict who will tolerate it well/poorly; I pray all you new riders will be in the latter category. Sorry you have to be with us, but glad you found us. Harley, I've passed through the veggie and exercise cars and headed straight to the wine and chocolate cars, and I haven't budged in days. Soon my rear will be too big to even think about moving--it'll take a crane.
<:AtomicElement>I'm so excited...my niece found out Sat. she's having a girl. Woohoo! I really didn't care which she was having but it'll be fun to have a little princess. :-) She's due the end of April so I'll get to meet her next summer.
<:AtomicElement>Vacation is wonderful...Saturday was a pajama day. I napped in front of the TV for hours, went to bed early, and slept all night--except when the thunderstorms woke me up. A big front is coming through and we might have some snow tomorrow; can't let all you NE, NW, and midwest people have all the fun. Stay warm and safe!
<:AtomicElement>Virginia, happy new stove. I hope your party goes well...I'm sure it'll be a blast!
<:AtomicElement>Basha, hope all is well with you. How's your son doing?
<:AtomicElement>Murph, take care of yourself in snowy Boston.
<:AtomicElement>Welcome again to our new passengers, and Happy Holidays to all. Happy Winter, too--looks like it might be a doozy!
<:AtomicElement>Love, Lynn
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Dang it...it's baaaaack. Does anyone have any clue where this Atomic Element thing is coming from??!
<:AtomicElement>L.
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Lynn
Congratulations on your niece's good news! ... A great niece!! They are so much fun! I have also skipped the exercise car for about a week now. I have a nasty sinus infection, and I think I'll wait till I'm over it before venturing out to that car again.
The atomic element is back! LOL Do you work in science, by any chance?
Margot:
Lynn is right. The only way to know how you are going to do with Tamoxifen is to jump right in and give it a try!! Climb on the train, and we'll keep you company on your ride on this train. It is sometimes rather bumpy, but you can do it.
I've been taking Tamoxifen for just over a year now. I had the uterine se's... mainly, the endometrium thickening, and uterine polyps, so in August, I had a D & C, with hysteroscopy... lucky me! I just saw my onc, and got a brand new Rx for another year's supply of Tamoxifen! YIPPEE!! I really hated the effects of Tamoxifen on the uterus, but my gyn onc refused to give me a hysterectomy, so I wouldn't have to worry about any of that stuff. My onc wants me to stay on Tamoxifen for TWO years, and then to switch to an AI. So, only ONE more year!My main se that bothers me even now sometimes, is the night flashes... ugh! When I keep waking up, BURNING UP!
Well, only 11 months left for me, but who's counting?
Good Luck!
Harley
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Hey all, thanks for all the info. on Tamo. I did gain weight but lost my period! Good trade off? We'll see when I have an ultrasound in Jan for my 6 month check. I also started getting leg cramps but my recent UA and bloodwork came back normal. My nurse told me to drink orange juice so I'm drinking a couple of glasses a day (sometimes a little passion fruit rum ends up in it at night). My fatigue is still there and my astha is acting up but I'm sure my onc will say it's not the Tamo. I also don't have the stamina I used to. I can only shovel one driveway instead of 2 or 3 that I used to do. Oh well....life goes on.
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Thanks, Harley. I guess I'm worrying myself a little prematurely.
I really did well on chemo (better than I expected) as far as side effects. I lost my period but didn't get any hot flashes.
Since I've already lost my period - will Tamoxifen most likely keep it that way? Do the hot flashes and/or night flashes occur as a result of not having your period (menopausal side effects?) or are they directly related to the Tamoxifen itself?
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Thanks for the welcomes and all the encouragement. Margot, we will be newbies together!
The bottle is still sitting there on the bedside table unopened. I don't know why I don't just start.
I already have joint pain, trouble sleeping, moodiness, night sweats. And that's all before starting tamoxifen. I'm not sure how I'll know if I'm having side effects.
I am finally going to break down and get one of those daily reminder pill containers. I never used to take more than a multivitamin and a calcium supplement, and now I can't keep track of all the prescriptions and supplements I'm on. Life sure changes.
Chris
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Tonic water has really helped me with the leg cramps. If I don't drink some, I'm up in the night trying to walk them out. That and the occasional hot flashes seem to be the main ses that I have had. My energy is finally returning to some degree, and I finished rads the end of May. I had a 6 month check on Friday, we are "watching" some swollen lymph nodes and my white blood count is low. Overall, it was good news.
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Chris,
The pill containers really do help. I have two that each hold pills for a week broken down by the day. I keep the one that holds the pills I take in the morning by my computer so I notice that the pills are still there if I forget to take them before breakfast, and I keep the one with the pills I take with dinner in the dining room since that is where we usually eat dinner. The thing that they really help with is that did I remember to take my pills today, or was that yesterday? I can tell with a quick glance if I've already taken them or not. I didn't want to miss doses, but at the same time, I don't want to double dose, and the containers really help with that. Since I fill a week's worth of pills in advance, they also force me to notice when my prescriptions are due for refills before it gets to a critical point.
The ones I use were about $1 each at Wal-Mart, and they were definitely a good investment.
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